accept but not define...
the view from where i rest, canon digital rebel xti
When I read through my nicely put together post-op folder that the nurses handed me after surgery, I was a bit surprised at the part that said one of the possible side effects of this surgery is depression and crying.
I remember reading that at the time when all I could think about was getting through each hour without a lot of pain and being relieved that this surgery is over and feeling hopeful that my new journey was beginning. I couldn't imagine getting weepy and depressed. I felt beyond those feelings that I had suffered for so long. I have felt beyond those feelings for quite some time.
Until yesterday.
I think it started happening when I was doing research on endometriosis yesterday morning. To be honest, I haven't really focused on that bit of this whole experience. I just knew the doctor was 98% sure I had endo and this laparoscopy surgery would prove that and if she did see it, she would get rid of it all. So, in a sense, I felt like...well, even if I do have it, by the time I wake up it will be gone. So I'll wipe my hands of it and move on, right?
Well...not so much.
The research told me it was a chronic disease. That it never really goes away. That there is a good chance it will all grow back and if we want to conceive, we better get on the ball for the next 6-9 months post surgery. Even though I was only looking at holistic websites on endometriosis, it still listed all these herbs and foods and drinks I should be consuming to keep my immune system strong because my immune system being whacked out is the whole reason endometriosis grows all over my organs.
Even though a few years ago, I had read up on endometriosis during our quest to conceive and knew it could be a slight possibility, I never really thought I had it because I didn't have symptoms like so many do. Since I didn't have any symptoms, my doctors never really focused on this as a possibility. I had regular periods, ovulated each month, hormones were normal, etc. etc. I did have pain each month but I didn't think it was out of this world pain like I read those with endo have. The only way you can find out if you have it, is to have this particular surgery and we all just avoided it, not thinking it was necessary.
Three years later in our quest to conceive, I have a very painful month and in warp speed, did the ultrasounds, MRI's and this surgery to all confirm that all these years, I indeed have had this.
It's so new to me. I am trying to become familiar with it enough to acknowledge that it is part of my life but not enough that it controls me. I can feel myself spiraling into a doubtful abyss after reading all that I've read. The internet and all its information can be a blessing and a curse.
I want to be one of those miracles that conceive a healthy baby post surgery and has a healthy pregnancy. I want to take on the Kris Carr "Crazy Sexy Cancer" attitude and walk into this fists first with a "Crazy Sexy Endo" attitude.
I know I'll get there.
But today I feel a welling of fear and doubt. I feel an annoying black cloud trying its best to hover above me and block the clear sunshiny view of my world.
Over the next few days, after I let these emotions flow through me, I'd like to wake up and tackle this. Do whatever it takes to build up my immune system and rock the world of endo and not be one of their statistics.
I do still believe that no matter what, I will indeed be a mother. Our decision to adopt has brought us much comfort but it has not taken away that longing to conceive a child together.
If any of you have any glorious endo stories of family and friends that were still able to conceive healthy babies, please leave them here if you have a moment. I'd love to invite you to help me get to that positive, graceful place. I am also open to alternative healing therapies you are aware of.
I want to accept that I have this chronic disease but not allow it to define the outcome of my life.
44 Comments:
Hi Boho...I'm so sorry you're feeling blue and wish I could take it away.
I do have one of those stories of hope though...someone very near and dear to me conceive not one but TWO healthy children despite a diagnosis of endo. Hers was painful and quite severe and they watched her like a hawk through each pregnancy....but there were NO complications and she now has a healthy 10 year old and a healthy (and very energetic) 3 year old.
Be well, rest and take care of yourself...I know this journey will have a happy ending for you.
Oh honey, this makes my heart sad, for this was supposed to be a time of cleansing and renewal...but it is still and will continue to be. You need these few days to process the information that you have read and sort through it. (and stop reading any more about it *wink*)
I certainly agree with you that reading up on any illneses via the internet is a blessing and a curse. There is so much information, but many times, it talks about worst case scenario and other info. that just may not be pertinant to our individual situations and journeys. The end result can be exactly what you are feeling right now. (I remember going throught this myself)
I hope that you are physically healing, and I know that despite this cloud that you feel right now, the other side will bring you light and hope, because those things are already nestled within you.
Sending you love and peace.xoxoxo
p.s. BUY THE BOOK!!!!
love you.xoxo
Hi,
You don't kow me but I read your blog regularly...I am so sorry you are feeling down...
I have a dear friend who married later in life and thought kids were out of the question due to her painful endo she had dealt with for many years...in short 10 years later she now has three beautiful healthy children ages, 9, 6, 4
Rest up and be well...
First off... lots of love and support sent your way...
Second, yes I have a story of a girl and her husband who I used to work with that had the same problem. She had the surgery and before you knew it, she was pregnant. They never gave up with the idea and belief that they would conceive. And they did. You will too! Just get busy once you're healed!!!
xoxoxo
me-nikk
I'm a new reader but wanted to let you know that after months of trying, I was an endo-baby. It can happen! If you set your mind and heart on it, it WILL happen!
Endo runs in my family and so I'm going to do some homeopathic research as well to see what herbs you've been reading about!
oh honey honey,
how i want to wrap you up in love right now.
if i may make a gentle suggestion, maybe stop reading the info on endo right now. i speak from experience, with my sickness i used to always research on the web, and would completely freak myself out. they are just numbers, other peoples stories, NOT yours. :)
i know i am going to be throwing you a baby shower soon....i had a glimpse of it yesterday after i took a long walk on the beach.
trust me on this one.
sending you gentleness, and so much love and care...
xx
mcmermie
A definite diagnosis is always overwhelming, and there is SO much you could read about it (i'm sure A was the same) - and i know how good you are at doing the research :-)
My advice would be to step back from the research and do what my gran used to say: go gently. you guys will work out a plan of action that fits in with your philosophies and beliefs... so for now just get healed and healthy, k? the cloudy emotions will pass... promise
love you xxo
Denise,
First of all, Endometriosis is a lot more common than you think. Every woman in my family has had some form of it. I had a friend a few years back whom I reconnected with through facebook- she had a severe case and had it removed. She is due any day now to have her first baby. It took about 3 years of her trying - but she did it.
I also know of my Aunt who at 40 had her second baby- she had endometriosis. Amy lynn is now 8 and my Aunt is going to have a hystorectomy now because of the Endo - but she has had two children - 17 years apart in age!
Try not to get too discouraged in statistics. You are not another statistic - you are an individual who is going through a unique journey. I have no idea how strong your endo case is, but even the most severe cases I have known have managed to have babies.
Cheers & Hugs,
Denise,
I rarely comment but so often read your words here. I thought that this time, maybe I did have something that I could share with you.
I have endo and in no way does it define me. As a matter of fact, I have been unbelievably, incredibly successful in maintaining my health through diet, acupuncture and moxabustion. Honestly, with serious dedication to my diet I all but forget that I even have it. I do not have children but haven't tried yet either, so that doesn't count. :)
My aunt also has it though hers is much more serious. But through the same steps, she has it under control and has conceived, twice. She has two gorgeous girls that have brought her much joy.
I am more than happy to share specific details with you, if you are interested. I don't want to offer any unsolicited advise though, so please just know that you can email me anytime or call if its easier. tanaya(at)gmail(dot)com.
i am so grateful for all these juicy stories!
they're beautiful. keep them coming. it is adding to the hope i already have.
i am sure much of my cloudy feelings are coming from the pain meds, and me trying to slowly get off of them. that stuff messes with your emotions, man!
but truly...this is so helpful.
and tanaya...i have never heard of moxibation until now. how fascinating! i might take you up on your email invitation soon.
love to you all,
boho girl
Denise,
I have been a faithful reader for quite some time now...and I was the silly girl who emailed you last spring about blogging! Ha, I never did finish that article for my class :( But your words have encouraged me to continue blogging...and doing yoga...and just living life as it comes!
I am so blessed by your blog, by your words. I am sending so many good vibes your way during this time of healing...and I know you will be blessed with a little boho baby soon!
And although I don't have any special stories to share, I would suggest, like many already have, to step away from the information and center yourself again...you have the strength to continue on this journey without getting bogged down by statistics and negativity!
Again, thank you for the words you write...they are so inspiring :)
Much love and positive vibes,
syd.
i don't know how much help this will be to you (it's not speicifically targeted at your affliction) but there is a great book written by a woman called Brandon Bays. She has written a book called "The Journey" and also does seminars and workshops I think.
---
Brandon Bays is one of the most dynamic and profoundly innovative teachers in the field of mind-body healing today. She is known for her warmth, caring, and spontaneous humor. Over the last 30 years Brandon has become highly trained in all types of personal development, and remains at the cutting edge of mind-body healing. Her work is inspirational. It has been enthusiastically endorsed by Dr. Deepak Chopra, Dr. Candace Pert, John Grey, Wayne Dyer, Jane Seymour, Anthony Robbins, and many others.
---
I hope that this is of some help! Thanks for continuing to share your journey, your words are an inspiration.
my beautiful boho,
when i read your words earlier this afternoon, i was at a complete loss for what to say...i have no glorious stories to tell...no advice at all to offer up.
i am so happy to see the comments pouring in...wonderful and inspiring stories being shared.
i believe...
in you,
your boy,
your beautiful boho baby.
wrapping you up my love,
k
xo
I have a story for you. One of my precious friends here in Maryland had (still has) severe endometriosis. They told her that even though she ovulated wonderfully, the eggs would not *thrive in the state of her uterine environment* so it was basically pointless (according to the docs) for she and her husband to continue trying. They decided to adopt a precious baby son from Florida 2.5 years ago... he is a JOY.
Then miraculously she got pregnant... problem was that she had been pregnant twice before but miscarried due to the endo, so she protected her heart from getting too excited. But the baby stayed... he kept growing... he attached himself in her uterus and hung out there for 9 beautiful months. She didn't even have that surgery, and yet the miracle occurred in her unlikely womb. Know what they named him? Zachary. It means "the Lord remembers"... how perfect is that... she said she could think of no better name because He surely remembered her deep desire for a pregnancy and birth.
Now they have an adorable 2.5 year old rambunctious boy... and he has a healthy 4 month old baby brother. Miracles do happen. And of course now they're totally open to any more of these!
Deni, I pray and hope this same kind of miracle for you. I also hope this story encourages you.
MUCH LOVE,
calissa
i have no stories for you, but just wanted to say i love you and am here and am loving all these stories in your comments. you are not a statistic and your baby will be here soon. i feel it.
xoxo
Endo runs in my family too. My mother had 2 children and my sister has had 4(!)the first at 21 and the last at 40. You know your heart, your path. Trust and tend to yourself. Remember to breathe and sit with your truth. You will have beautiful boho babe(s). Blanketing you with peace and love.
Dear Boho Girl,
I read your blog on a regular basis and think it's wonderful. I don't have any stories to share and I have no experience in this myself but being a woman and a mother of 2 grown boys I can understand how important this is to you and I send you all my prayers and best wishes that your dreams come true. You will be a fantastic mother and your kids either natrual or adopted will be some of the luckiest kids around.
Love,
Kelly
I have a friend who has endo diagnosed since age 17. She was not not even planning a pregnancy at age 35 when she and her husband learned they were having a child. She had a lovely healthy baby girl with no issues. The internet can be a helpful informational resource, but don't read too much. You are going to be just fine. Your initial reaction was to feel positive about the surgery and hopeful in its success, and I think that you should trust your gut reaction and just let though doubts wash down the drain!
Denise,
My sister's friend from high school had terrible endometriosis when she was a teenager, was told she could never conceive, then unexpectedly got pregnant when she was 18 and had a wonderfully healthy baby boy. She now has 3 kids! :)
Our friend also had some severe endo. After years and years of concentrated trying to conceive, she was just about to quit her quest for a baby and her marriage. A few days later, the test was positive. She has a beautiful baby girl she called Tiger.
Hugs to you Boho. Hugs. Hugs. Hugs.
Hi Denise! I'm afraid I don't have any specific success stories, but I do know that the one things that "cures" endometriosis is, ironically, pregnancy. Maybe some of your other readers can clarify what happens after delivery (I believe the endo can grown back), but you can rest assured that when (not if!) you get pregnant, you'll have nine blissful months of not having to worry about how or if the endo could affect a growing babe.
Best wishes, and best of luck.
-Chan
Oh sweet girl, I am so sorry you are having a sad day. From my personal experience with this surgery, I can assure you that the gloomy clouds will pass soon. Hang in there and lean on your friends, we want to help you through this.
As for sharing stories, well you know mine, but here is goes... endometriosis since i was 16, multiple surgeries to remove cysts & endo. Went through many IVF cycles and now have one adopted beautiful boy and two biological (IVF) gogeous girls. I conceived both girls the month following my endo "clean out" surgery, so lots of reasons to be hopeful in the coming months. The clean out surgery is like starting all over with a clean slate!
Thinking of you so much, sending lots of prayers of healing and positive thoughts to you!
Blessings,
ttd
I was in so much pain before I had surgery, but now my endro is under control. My doctors have always been a bit pessimistic (sp?), but after the surgery I was able to quickly get pregnant. I hope that the same is true for you. Take care.
you are a brave girl for getting through this as far as you have with the attitude you are carrying. i was reading the bible the other day and this one verse really stuck in my head where God promises this:
I'll turn your Heartbreak Valley
into Acres of Hope
Hosea 2 (message)
i hope that the bible talk doesn't scare you, i don't know what you believe but i am stepping out here and hoping that this little verse might give you a little ray of sun in the valley you are getting through.
i second the notion to stop reading internet info...it is so overwhelming and you are you first, you will have your experience and with your beautiful outlook, it will be a beautiful one. sending healing thoughts and energy out in your direction, hope it helps. smiles.
My sister (who is 38) was told by her doctor that her cysts were so bad he wanted to do a hysterectomy! After all the years she spent trying to conceive, I'm surprised that doctor is still alive... I'd have thought she'd have lunged at him and torn the skin from his limbs.
Instead she said "There is a child waiting to be born through this uterus, thank you very much. You certainly cannot take it from me until that happens!"
Then she went home (cried a lot) and found an encouraging and supportive women's hospital where (on her first visit) she had a doctor recommend laser surgery.
Six months later (on the dot) she was pregnant with my adorable nephew, Alex, who just turned one last month.
Imagine if my sister had listened to that first doctor! She knew, felt and believed that she had a child in the universe waiting for her belly to get it's act together.
Remember, you play a part in what you can accomplish... even when it feels like you have no control, your mind and spirit are powerful!!!
Hi Denise,
You don't know me, but I've been reading regularly for a few weeks... found you through Superhero Andrea's journal.
I'll share my story of hope for you. After a few years of suffering through what I thought were just miserable cycles, I ended up diagnosed with a large ovarian cyst and endo. The cyst burst and I had emergency surgery (I had been scheduled for regular surgery two weeks later, but the endo just couldn't wait!) and everything was cleared out. My doctors told me that we would want to try to conceive ASAP, and they figured they would see us in 6-9 months to talk about my fertility.
Well. I allowed myself to wait through two cycles to heal, and in the third cycle, the first in which we tried, I conceived a beautiful boy. I used Taking Charge of Your Fertility to give us the best chance of good timing, and it worked. I also highly recommend Dian Shepperson Mills book on nutrition for endo. I do believe it made a difference. I have two beautiful boys now.
Please have hope. Take care. :)
oh lovie- I am sending you warm snuggles and kisses.
I am glad you got all these wonderful supportive stories and comments.
I am always here to talk love.
Call me
XOXOXO
Coming out of lurkdom to post.
Your words are very powerful for me.
For me it was learning I had cysts which were really ovarian cancer and undergoing an unexpected hysterectomy. And in my way, though different, I feel you and know the roller coaster of illness and healing and longing and life.
It is hard. Crazy sexy. And hard.
Your honesty is refreshing and a gift.
Your words are beautiful.
tears rolling down my face at all the beautiful positive messaging here :) happy tears ~ that you are so brave and beautiful to know that reading the negative is not helpful but soliciting the positive is exactly the way to go ...
crazy sexy endo attitude ~ absolutely, i love that!!
a quick story, different but sort of related in that the power of positiveness is a beautiful thing ~ they told my parents that my sister wouldn't live past the age of 2 so they should put her away in a home, they didn't ~ they believed in her and our family and she thrived. then they told my parents that my sister wouldn't see her 8th, then 15, then 18 ~ she defied them all with her beautiful love of life, her amazing strenth and lived a beautiful life to the age of 27 surrounded by the love of our family ...
attitude combined with love is powerful, oh so very powerful ~ you will be a mother honey .. i believe, warm hugs!!
Hi Boho!
Today my nephew turns five. He’s a child that my sister-in-law was told she’d never have. My sister-in-law had the same surgery you had. At the time of her surgery she was just planning to get married and wondered if by the time she “got her ducks in a row” if she’d be able to have a child. Like you, she was told she had a window of time… She did not get pregnant within that window of time. Because the window seemed to have closed and she still had to go back to the doctor a few times for treatment related to endometriosis she felt that her chances of having a child were rather slim. She and her husband let go of focusing on pregnancy and just started to live and simply enjoy life together as a couple (more difficult than this simple sentence sounds). Five years into their marriage, one day she was surprised to find out she was pregnant! We thought this would be her only child and yet she became pregnant again two years ago, giving birth to identical twin girls.
Don’t lose hope.
Hey Denise,
My sister in law and aunt have endometriosis and both have had children! My aunt had triplets via envitro and my sister in law has had two children "the old fashioned way" - 12 years apart, nonetheless. All of their children are happy and healthy. I wish you great luck in your quest to conceive. I can totally empathize with you and then some, as I will never be able to conceive a child that is mine because I do not produce eggs (it's a long story). There are always other possibilities as you mentioned. Thank you so much for sharing your story - it helps to know that there are other women dealing with fertility issues, even if they are completely different from mine. I've been reading your blog for a while and will continue to follow your story. I love your writing and photographs. You've got some talent, girl!!!!
My friend Val has endo, and had a laparoscopy. She was scheduled for another one about a year later, but before she could attend it she found out she was pregnant! She now has an absolutely gorgeous little boy, Henry, who is 7 months old. You'll do it! x x x x x x
Hi there. I only came across your blog today. I'm reading from all the way over in New Zealand and wanted to share my story with you. I had a laparoscopy in 2004 for suspected endo. I had had a lot of pain for several years and my partner and I hadn't used contraception in over 4 years without even a hint of pregnancy. I had moderate endo with cysts on my left ovary (but I knew that from where the pain was) and it was all removed. 7 months later I became pregnant with my beautiful son Olly who is now two years old. I've read that it is best not to have any more surgery if possible and being pregnant did help with the symptoms (of course!) and I breastfed for 18 months and I think that helped too. I'm not sure what is going to happen next but I firmly believe that by living as healthy and balanced and relaxed and happy a life as possible I can help myself. Endo is so common - I'm sure my Mum had it, altho she was never diagnosed, all we can do is make the effort to live the best life that we can with what we have been given. I feel really positive for you and your future. I think what defines us is what we do and how we respond to what happens in our lives and not those events. Much love, Anna and Olly
I read youur blog occasionally as I also read your sister Darlene's. I pray that she is doing well as it sounds like she is going through a rough time.
I pray that your surgery was successful and that one of these days very soon you will announce that you are having a baby on your blog.
My daughter-in-law and son tried for almost 4 years to have a baby... she was told that she would never conceive and after surgery to clean out endometriosis and to correct another problem... she did indeed conceive. They had a little boy who is now 4. They have been trying agaon for the past 2 years and no luck... but they are ok and would have adopted had they not been able to conceive and may still do so in order to give thier little guy a sibling.
I am another frequent reader yet a new commenter.
I was diagnosed with endo at the age of 15 when I had my first surgery. I was told then to have a hysterectomy but my parents and I said no. I had surgery about every 2 years and by college was told that if I didn't have a child in my early twenties, it would never happen.
I was married at 28 and my husband and I began saving towards the adoption process and had decided on the country when we were surprised with a pregnancy. We've now been blessed twice.
I'm sending all of the luck/love/faith that made those little miracles happen to you now- you derserve them and however your baby comes to you, it will be your own miracle.
I come and visit you almost every week and almost never say "hello" - that's not very polite and I plan to fix it.
I have lots of stories, endo seems to be pretty common amongst women of my 'age' and stage in life, i.e. in our mid 30s without having had children yet. Lots of others have shared their stories already thought, so for today I prefer to tell you that your story is the story that matters and that I constantly admire and am touched by the honest, brave, loving way you are walking through your story.
I have a friend who conceived shortly after surgery for endo. It can happen!
I applaud the fact that you're thinking about adoption simultaneously. During the darkest hours of my infertility journey (after they told me, at age 27, that my ovaries may have aged prematurely--turned out to be a lab error!), I had to seriously confront how far I was willing to go to become a mother if the medical thing didn't work out. After soul searching and research, we began the process for an int'l adoption. We completed the homestudy, background check, etc., while still undergoing infertility treatment. Knowing that one way or the other, I WOULD become a mother made a huge difference for me...and the adoption steps felt like the most positive actions and steps forward. I suddenly felt back in the driver's seat. We agreed we'd try three more months of treatment and then stop and pursue the adoption full time. I conceived on the third and final cycle. But I had already begun to find a happier place. I am hoping you are able to conceive very quickly, but I applaud your efforts to keep moving forward in a positive way...keeping all options open. Some days will be easier than others and that is normal. Hang in there...many people are pulling for you! God bless.
Well, after reading all that, I kind of feel I was *led* here, for the first time, by Superhero's site. I, too, was given an endo diagnosis and went through laparoscopy (the doc, who I just adore, even printed out photos of what he'd found because it was so extensive. He knows I'm enough of a geek to think it was fascinating!) THEN we found there were other issues making pregnancy difficult, issues like hormones that had nothing to do with endo. Just like Amber, we began preliminary work toward adoption, because the "how" we became parents ultimately didn't matter a bit to either of us. And then... on the third and final round of hormone treatment... we were pregnant. 6 months after surgery. And with identical twins, which means just one egg and a miracle. And thanks to the laparoscopy, meds to get me through the first trimester and some incredibly good fortune from the universe to have medical treatment like that surgery available, we now have 6-year-old daughters. It *can* happen. I'm sending everything positive I can out to all of you waiting and agonizing and hoping. It's never a straight journey, so take time to heal and be gentle to yourself.
I just stumbled on your blog (beautiful!) and I didn't read the other comments so sorry if I am being repetative, but I have 2 very close friends who have both had the same troubles. One who tried exactly the same time as you, 3 years. Glucofage (sp?) did the trick for her. She got pregnant on month 2. Same with my other friend. She had tried for a year and finally got pregnant, thanks to glucofage.
Feel free to email me for my phone number if you would like to talk to either of these girls, I know they'd be happy to!
Oh, and my first friend-she got pregnant again right after her first child was born (well-8 months later.) You are super fertile after having a baby. And for some women, the endometriosis actually will go away after having a baby. My second friend doesn't have nearly any problems from it at all anymore and it would send her to the E.R. every month.
:)
Sandi Henderson
Oh, I don't think blogger gives you the email-here you go. :) If you need it!
portabellopixie@aol.com
Sandi
I found your blog on your photography website. We've sent a few emails to each other, but I won't bother trying to get you to remember me. But reading this post... To be honest, I don't know how it made me feel. I feel bad for you! But I can tell you're a very strong woman. You may not feel it, but I'd have crumbled under those circumstances.
I'm a twin. My sister's a strong woman, too. She was diagnosed with Endo when we were 18. Very VERY young! She was Batallion Commander in the JROTC program at our High School and was Drum Major in our marching band and had gotten accepted to West Point. But then she just.. FELL APART physically. She couldn't keep up her duties as either and eventually started lacking at school. It REALLY affected her. But two years after her diagnoses, she got pregnant! And I have an ADORABLE nephew, and another one on the way!
It's possible! It doesn't only happen in fairy tales! I haven't decided whether or not I believe in miracles yet, but that was the closest thing to one I've seen... AND IT HAPPENED TWICE!
since this didn't let me log in with my blogsome account, if you wanna check it out, visit me at http://www.quackmehard.com
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