As I am struggling to come to terms with my infertility I am finding that there is an incredible online community for fellow infertiles out there... such a wonderful support and information network....but just because I have endo and am infertile... do I fit in? Do I belong?
Most of the online community and the blogs of all the incredible women I have explored (and I am still new to the blogging and online world) I haven’t found someone like me - yet.
Someone who is infertile but isn’t desperately wanting to have a baby – yet. Please raise your hand or holler at me if this is you.
Someone who is infertile but isn’t desperately wanting to have a baby – yet. Please raise your hand or holler at me if this is you.
For... I am infertile (it still pains to me say it out loud and still pains me to say it without tears)...and I am not wanting a baby... well not yet anyway. That doesn’t make my pain any less real for rather I find this predicament to be rather daunting as if I have a damascus sword hanging over my head.
When I want a child, when I want my own family, in whatever circumstance that maybe I definitely know it’s not going to happen. At least not biologically.
But right now I am still grasping with the infertile status. Right now I feel as if it has given me a name and an identity much like endo has.
When I spoke of the Baby World incident I wonder if I mentioned that I felt wrong just looking at the beautiful cot. I felt like the shop owners were going to come out and say to me “you can’t be looking at this stuff... you are infertile... you aren’t going to need this stuff... move along and let a fertile woman have this beautiful cot”.
Ridiculous I know. Thinking that somehow my infertility would be a violation of some kind. But those are the awful painful thoughts that I think right now. Is this normal? Or have I gone mad from the loss of reproductive organs. If I feel like this now with my uterus and cervix gone how I am going to feel when they take my ovaries and fallopian tubes away... the other necessary baby making bits?
When I want a child, when I want my own family, in whatever circumstance that maybe I definitely know it’s not going to happen. At least not biologically.
But right now I am still grasping with the infertile status. Right now I feel as if it has given me a name and an identity much like endo has.
When I spoke of the Baby World incident I wonder if I mentioned that I felt wrong just looking at the beautiful cot. I felt like the shop owners were going to come out and say to me “you can’t be looking at this stuff... you are infertile... you aren’t going to need this stuff... move along and let a fertile woman have this beautiful cot”.
Ridiculous I know. Thinking that somehow my infertility would be a violation of some kind. But those are the awful painful thoughts that I think right now. Is this normal? Or have I gone mad from the loss of reproductive organs. If I feel like this now with my uterus and cervix gone how I am going to feel when they take my ovaries and fallopian tubes away... the other necessary baby making bits?
I am not married. I have never been engaged. And that is not to say that I haven’t dated. I sure have. I have had plenty of eligible bachelors but I have never been ready nor willing to commit myself to someone. Definitely a ‘singleton’ and very happy to be one. Selfish and independent I really haven’t thought about family and children until now. Now that I can’t have them that is.
Did I miss the proverbial boat? A case of wanting what I can’t have? Should I have perhaps settled for one of those eligible bachelors? Would I then have been one of those women TTC and not in the place that I am in now? But wouldn’t that be the very same place only in another way from another point of view?
Did I miss the proverbial boat? A case of wanting what I can’t have? Should I have perhaps settled for one of those eligible bachelors? Would I then have been one of those women TTC and not in the place that I am in now? But wouldn’t that be the very same place only in another way from another point of view?
I will never know these answers and I shouldn't ask the questions. These are the late night insomniac ponderings of a woman who is in desperate pain and taunted with the very idea of infertility. New infertility at that.
Does it mean that I have to go through this infertility pain twice? The first time being now when it has been surgically thrust upon me due my dreadful case of endo and then the second time when I finally decide that I am ready and want children but know that it’s not possible. Double the pain?
Does it mean that I have to go through this infertility pain twice? The first time being now when it has been surgically thrust upon me due my dreadful case of endo and then the second time when I finally decide that I am ready and want children but know that it’s not possible. Double the pain?
I have spent more than half my lifetime in constant pain. I have lost all of that time to moments of absolute despair. I have felt isolated and alone. And now it is if I have entered yet another dimension of the same thing. So I leave myself once again pondering.... Is there anywhere that I can fit in? I don’t belong with the fertiles because I am not one of them and I was never really one if I am going to be honest.
Today as I dropped Niece 4 off at kindergarten two of the 'Mothers That Snub Me' because I am an AuntieParent (I promise to blog about that) were talking. One of them heavily pregnant and with two gorgeous girl in tow was asked by the other evidently fertile mother of three how she was feeling. The extremely pregnant woman replied as I was walking away “I don’t want to be pregnant anymore. I hate it. I am so uncomfortable”.
I got into my car and again the silent tears I have been speaking of. The ones that sting my eyes and create the deep profound sadness. I know that this is a reasonable thing to say by a pregnant woman with two children but I just can’t stand to be around that at the moment. I just can’t. I fear I might make a public spectacle of myself when I challenge these complaining fertile women when they complain and grumble about their pregnancy and children.
I got into my car and again the silent tears I have been speaking of. The ones that sting my eyes and create the deep profound sadness. I know that this is a reasonable thing to say by a pregnant woman with two children but I just can’t stand to be around that at the moment. I just can’t. I fear I might make a public spectacle of myself when I challenge these complaining fertile women when they complain and grumble about their pregnancy and children.
Because of my endo and because of my hysterectomy I am forced to contemplate and address some really complicated and painful issues. I am finding that my struggle is not only with infertility but also my very identity.
Where and who do I identify myself with now? And where does this inherent need to belong to a group come from? Does it come from having an illness and needing to be accepted by others with the same illness? I think it does for when someone knows about endo or even has endo I relax around them. I feel comfortable bordering on normal. Because I don't have to EXPLAIN.
Where and who do I identify myself with now? And where does this inherent need to belong to a group come from? Does it come from having an illness and needing to be accepted by others with the same illness? I think it does for when someone knows about endo or even has endo I relax around them. I feel comfortable bordering on normal. Because I don't have to EXPLAIN.
During my endo journey and now my ultimate destination of infertility I have been supported by my close friends. I am not a high maintenance friend. I don’t require a lot of attention and I don’t require a lot of phone calls and visits. I guess perhaps maybe that is because I keep people at arm’s length. I have been reluctant to talk to my friends after my surgery. In their ignorance they have all thought that a hysterectomy would be the ultimate cure and I would be miraculously pain free and disease free.
I am ashamed that I am so disease ridden that a hysterectomy couldn't alleviate my pain. I am ashamed to tell people that my insides are so diseased that they have to cut everything away and that still won't help. I am devastated that I am infertile.
I am devastated that I am powerless. I am scared that they won't believe me just like they don't believe I can be in that much pain. I am scared that they will feel bad that they won't be able to help me. I am scared that they won't believe me that the pain will always be there.
A simple google search on their behalf would reveal a lot more. I sometimes really wonder about people. I know that not everyone is the same but if I had a friend who had a disease I didn’t know anything about and I saw how this devastated and controlled their life I would ensure that I did everything I could to understand it. So that I could be a better friend. Because that is what a friend is supposed to do. During my recovery I had to isolate myself from my friends to avoid some really hurtful and sometimes very stupid questions.
I am ashamed that I am so disease ridden that a hysterectomy couldn't alleviate my pain. I am ashamed to tell people that my insides are so diseased that they have to cut everything away and that still won't help. I am devastated that I am infertile.
I am devastated that I am powerless. I am scared that they won't believe me just like they don't believe I can be in that much pain. I am scared that they will feel bad that they won't be able to help me. I am scared that they won't believe me that the pain will always be there.
A simple google search on their behalf would reveal a lot more. I sometimes really wonder about people. I know that not everyone is the same but if I had a friend who had a disease I didn’t know anything about and I saw how this devastated and controlled their life I would ensure that I did everything I could to understand it. So that I could be a better friend. Because that is what a friend is supposed to do. During my recovery I had to isolate myself from my friends to avoid some really hurtful and sometimes very stupid questions.
Ironically it has been my male best friends that have been the best to me over the years. Their love and devotion came (and still comes) in the form of heating my heat packs and knowing precisely how hot I need it when I would visit, an ability to translate my slurry pain killer speech, drive me to hospital when required (even at 5.30 am), endure moments of intense pain with me, worry about the amount of drugs I have to take and always listen to my despair at what has happened to my body especially now. I suspect one of them even knows more about endo than I do!
None of my female friends were ever able to do any of that. In fact my female friends have been rather shockingly uninformed and uncomfortable. I had one close female friend ask me after my hysterectomy if I would have a period now and would I be able to get pregnant after the operation. Fortunately we were speaking on the phone and I could press the ‘end call' button and blame my service provider for the abrupt end to the conversation. Had she not even googled endometriosis? Not once? It really hurt my feelings that in ten years of friendship she was still that ignorant to a disease that has so significantly impacted my life. And because I carry the shame of endo I wasn't brave enough to ask her.
None of my female friends were ever able to do any of that. In fact my female friends have been rather shockingly uninformed and uncomfortable. I had one close female friend ask me after my hysterectomy if I would have a period now and would I be able to get pregnant after the operation. Fortunately we were speaking on the phone and I could press the ‘end call' button and blame my service provider for the abrupt end to the conversation. Had she not even googled endometriosis? Not once? It really hurt my feelings that in ten years of friendship she was still that ignorant to a disease that has so significantly impacted my life. And because I carry the shame of endo I wasn't brave enough to ask her.
It’s been a good thing that I have been doing a take home exam this week. It has given me the ultimate excuse to avoid emails and phone calls. I think that if I spoke to one of my beloved friends right now I don't believe I could speak through the tears.
I have been engrossed in international criminal jurisprudence and studying various journal articles on genocide, war crimes and crimes against humanity. I have been at my desk tap tap tapping on my laptop for well over 14 hours now with only a 45 minute break. I have a deadline to meet and that is in less than 24 hours.
Once again I can rely on my insomnia to ensure productivity! I am now going to delve into some online community blogging and discover who and what is out there. First I have to learn how to navigate around my own blog! But before that... I need some sleep.
I have been engrossed in international criminal jurisprudence and studying various journal articles on genocide, war crimes and crimes against humanity. I have been at my desk tap tap tapping on my laptop for well over 14 hours now with only a 45 minute break. I have a deadline to meet and that is in less than 24 hours.
Once again I can rely on my insomnia to ensure productivity! I am now going to delve into some online community blogging and discover who and what is out there. First I have to learn how to navigate around my own blog! But before that... I need some sleep.
Sweetie, I am so sorry. This breaks my heart. I understand the pain and the uncaring comments from friends. I understand how this disease can take away decisions that you should have the choice to make. Decisions that others take for granted. I have always wanted to be a mother someday, but that doesn’t make this disease any different for me. You haven’t wanted a baby desperately, but that doesn’t take away from the suffering of this disease. Endometriosis still hurts more than anyone could understand, unless they have felt the pain. There are so many endo sisters fighting along with you. Praying for ya, hon!
ReplyDeleteI posted earlier and I must also add after reading this one BOTH my diseases Endo. and Fibromyalgia are disease you CANT see!!(I STILL deal with that daily!!) You look fine on the outside! Even tho I have 2 amazing friends that after YEARS of 24-7 pain when they finally decided on a Hysterectomy they were blessed enough to be MOSTLY pain free!
ReplyDeleteI however know that many in what we called our ~ENDO CLUB~ that were like you and still hurt and still felt disease ridden and did feel like people looked at them different, because outside looking in they didnt~look~ sick!! Unfortunatly, if youve never experienced either of these diseases then you have NO IDEA the pain we feel or felt MENTALLY AND PHYSICALLY!! It is real and Im glad you were blessed with some good friends to be by your side!
Its VERY frustrating and I hope one day if nothing else you will hurt less or they will develope something to help you! Have they done the ~freezing~ technique? Dont know the name just know it helped a few people I know. My sons girlfriend has Endo. and my heart hurts for her and I have had to get on to MY son for hearing him say ~you always feel bad~!! Maybe God put me in her life to help her deal and help him understand....they are still together after 4yrs! I dont know the answer....I havent figured it all out for me either, but I do feel the ~disease ridden~ feeling still at times! BUT, I just try to live....one day at a time...one pain at a time....one good or bad day at a time!
I'm currently wiping away silent tears, because you pretty much said exactly how I've been feeling for the past four months. I had my total hysterectomy just this past August... I'm 24 and menopausal. Sometimes I feel out of place even on the HysterSisters site, just because I'm so young and have no children. The biggest issue I'm currently dealing with is that I am having endo pain again despite removing all of my "Female Parts". I'm terrified to tell anyone that I'm having pain-- after all, didn't I just have the surgery that would "cure" me?
ReplyDeleteNo one understands unless they have the disease... no one understands why you break down at seeing the most adorable little pink Halloween onsie at Walmart... "You can just adopt." is so easily said when you have no fertility problems.
I wish I had some words of comfort to offer you... but I know they don't really exist. So instead, I'll just leave you with the knowledge that I'm here fighting right along with you. I'll be thinking about you as your next surgery approaches.