You Cut Me Open and I... Still Need Surgery

11:37 AM

Chronic fatigue has clearly dulled my senses, so I bought reading glasses.
(I didn't know what picture to use for this, so I used one of me in my new reading glasses. After 25 years of perfect vision, I think my eyes are finally going. Either that, or chronic fatigue has officially dulled my senses.)

First of all, happy Endometriosis Awareness Month, everyone! If you're doing anything really cool to promote awareness in March, let me know in the comments. I just submitted a letter to the editor to my local paper that I hope gets picked up.

I kicked off this month right by visiting my ob-gyn this week. Fun times all around! If you've been following my recent posts, you'll know that I haven't been feeling well lately. 

I described my pain ever-so-eloquently to my husband, Andrew the other day as "It feels like someone took a needle and just stabbed my uterus all over. And then, they went to my right ovary and punched it a bunch of times. And then, they grabbed everything and squeezed it in their giant hands. And then, they probably poured rubbing alcohol over it or something, and now, I'm upset."

It's obvious that I'm a writer.

So it was clear I needed to see my doctor. I actually tried to get in earlier than this week, to no avail. As I sat in the waiting room, I ran through all of my symptoms in my head, trying to rehearse what I was going to say. It's hard to remember everything when endometriosis has such a variety of side effects that, in my case, like to change from week-to-week.

"Okay, so I have to mention the stinging because that's new. And if she asks how much pain I'm in, on a scale of one to 10 (ugh such a great question...), I'll say an eight. Oh, and I can't forget to say what happened two weeks ago because that was important. And..."

My ob-gyn walked in as her normal, chipper self. I appreciate her optimism in the face of my frustration, especially when the advice I got from my previous ob-gyn was "Just go have a baby, and that'll fix it."

Actual footage of my reaction to this suggestion
My current doctor always seems to have some sort of idea or another thing we can try when my medication finally fails me. But when I began to describe my new symptoms to her, she frowned for the first time ever.

The first thing she did, unsurprisingly, was offer Lupron. I immediately shook my head and said, "No. I don't want to do that." 

If you're unfamiliar with Lupron, it shuts down your uterus and sends you into a brief menopause to help manage endometriosis. Unfortunately, it comes with a slew of just awful and horrifying side effects. I know that's a bit of editorializing on my part, but I haven't heard a single good thing about this medication from anyone who has taken it. Most experience things like like bone pain, weight gain, additional pelvic pain (lolwut) and your traditional menopause symptoms. And yet, it's often offered as a cure-all for endo. (READ: It's not. Endo can still grow while you take it...)

Thankfully, my doctor respected my decision to not take Lupron. But she then said, "Well, I've been treating you for about a year now. And usually after a year, if medication isn't working anymore, I'd like to do a surgery."

Surgery.


I had a feeling this was going to happen soon. But I had really, really hoped I could push off a surgery for a little while longer. My first (and most recent) one was when I was diagnosed in December 2014. So now, just slightly over a year later, my endometriosis has likely grown back and, judging by how I feel, spread.

My doctor noticed my discomfort and said, "Well, excision is the only real cure for endometriosis." ...wait, what? Yes! YES! I have a doctor who actually recognizes that! 

If you don't know a lot about endometriosis care and treatment, it's often hard to find a doctor who actually recognizes the importance of excision surgery. (This involves removing growths and scar tissue while preserving as much of the surrounding organs as possible.) Many doctors recommend hysterectomies to women even younger than I am, which, believe it or not, does not cure endometriosis.

Now, if my doctor is an excision specialist, I'm not aware because I'm dumb and didn't even think to ask. (But trust me; I will.) But just knowing she understood the value of doing this procedure made me feel a little better.

But still, is it really time for surgery again? Right now? I really thought I had another year or two to go.



I left my doctor's office with a prescription for the painkiller, Tramadol (FINALLY!) and an appointment for an ultrasound to see if I did need surgery right away. This would detect any major nodules, cysts, tumors, etc. that would need immediate removal and, if there are none, would help determine if I wanted to have surgery now. Also, she tossed around the idea of testing me for interstitial cystitis, which is a bladder condition that often accompanies endometriosis. I'm pretty sure I don't have it, but HEY! Let's check for ALL THE THINGS.

To be honest, I felt a little defeated after all of this. I mean, I got answers and a prescription for a painkiller, which I've never, ever been given. (I've been fighting pain up until this point with Aleve and heating pads. It's super, sometimes, rarely effective.) So that's good!

But it's so, so frustrating to know that virtually the one and only treatment for my disease is surgery.

So, what now? I have one surgery a year for the rest of my life? That's expensive. And diminishes my already decreasing chances at having kids, if Andrew and I so choose.

And on top of that, what will that mean for my quality of life, long-term? It's a minor surgery, yes, but if I end up having five, six, seven surgeries some day, will I be able to do things the way I want to? Will I be able to keep up with my fitness and enjoy going to the gym like I can currently? I can live with a scarred-up abdomen, but will I eventually regret the internal scars these surgeries leave?

I never thought this is what I'd end up doing with my health and my life. But as my mom said, we do what we have to do for our health. And I really, really shouldn't feel sorry for myself, but ugh, seriously? I'm 25, and I have a lifetime of this ahead of me?

It just sucks that this is all we have to offer young women. "Sorry about your uterus. Here's something that will help for a little bit and then not help anymore." Sure, if I see an excision specialist, it would be more effective than having just any ob-gyn perform my surgery. But will my insurance even cover a specialist in another state if my state doesn't have one? And I mean, I'll eventually have to do this again, right? Is it worth the money?

And of course, I don't have good answers to these questions at the moment.


Right now, I'm desperately trying not to get too far ahead of myself. I have great health-care, a decent health savings account and an ob-gyn who believes in me. That's a lot better than many women out there have because yay, endometriosis is poorly researched. 

So I'm taking it a day at a time. I'll face this ultrasound, and then I'll go from there. And if it involves getting frustrated or angry or crying, then I'll let myself have my moment, pick myself up and do what I have to do.

At the end of the day, I just want to feel well. I know I'll never be "normal." But I'll settle for "normal enough."

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10 comments

  1. Hello, I am a Belgian mother of 17-year old son with autism. My son is verbal,followed normal education with help from me, his issues : shyness, constipation, concentration problems, problems with maturity, practically no friends because interaction with people is difficult, parasite, yeast on him, acne, kind of dandruff on top of his head. Since the age of 8, we have been trying a lot of natural supplements, hospitals med and i have wasted a lot of money trying to make him became a man and live freely without being intimidated by friends in the neighbor hood also to get him better and more focused for school matters and his general health. Nothing ever seems to pull through not until one day, i decided to share his situation to a very close friend of mine who claims there is an herbal man who cured her 12 years old son called Baba Alika and has also helped a lot of women to cure their children's Autism. quickly i contacted his email: babaalikahealinghome@gmail.com been giving to me by miss Ava, just to give him a test, i spoke to him he asked me to purchase his Autism roots herbs and seed oil which i did, he promised to send it as soon as purchased and thereafter i received it and start to use the Autism herbal med immediately on him for only 7 days instructed by Baba Alika. it was unbelievable after 21 days i was my son totally cured and free from Autism disgrace and embarrassment. There was so much improvement. He seems to get more awareness, gives more interaction at home, interact with friends that never wanted him close. Today i am here to spread the good news of my son health on how Baba Alika saved him from the nightmare and outbreaks of Autism. You can contact him via email: babaalikahealinghome@gmail.com if you are still in my past situation...I guarantee you, your Autism child is going to be healed and feel alive again just as mine right now.

    ReplyDelete
    Replies

    1. I am here again to give my testimony about a doctor who helped me in my life. I was infected with HERPES SIMPLEX VIRUS in 2014, i went to many hospitals for cure but there was no solution, so I was thinking how can I get a solution out so that my body can be okay. One day I was in the river side thinking where I can go to get solution. so a lady walked to me telling me why am I so sad and i open up all to her telling her my problem, she told me that she can help me out, she introduce me to a doctor call DR EDIDIA who uses herbal medication to cure HERPES SIMPLEX VIRUS and gave me his email, so i mail him. He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after 1 weeks the HERPES SIMPLEX VIRUS that was in my body got vanished . so if you are also heart broken and also need a help, you can also email him at dredidiaherbalhome@gmail.com or whatsapp +2349074505296

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  2. Hello, I am a Belgian mother of 17-year old son with autism. My son is verbal,followed normal education with help from me, his issues : shyness, constipation, concentration problems, problems with maturity, practically no friends because interaction with people is difficult, parasite, yeast on him, acne, kind of dandruff on top of his head. Since the age of 8, we have been trying a lot of natural supplements, hospitals med and i have wasted a lot of money trying to make him became a man and live freely without being intimidated by friends in the neighbor hood also to get him better and more focused for school matters and his general health. Nothing ever seems to pull through not until one day, i decided to share his situation to a very close friend of mine who claims there is an herbal man who cured her 12 years old son called Baba Alika and has also helped a lot of women to cure their children's Autism. quickly i contacted his email: babaalikahealinghome@gmail.com been giving to me by miss Ava, just to give him a test, i spoke to him he asked me to purchase his Autism roots herbs and seed oil which i did, he promised to send it as soon as purchased and thereafter i received it and start to use the Autism herbal med immediately on him for only 7 days instructed by Baba Alika. it was unbelievable after 21 days i was my son totally cured and free from Autism disgrace and embarrassment. There was so much improvement. He seems to get more awareness, gives more interaction at home, interact with friends that never wanted him close. Today i am here to spread the good news of my son health on how Baba Alika saved him from the nightmare and outbreaks of Autism. You can contact him via email: babaalikahealinghome@gmail.com if you are still in my past situation...I guarantee you, your Autism child is going to be healed and feel alive again just as mine right now.

    ReplyDelete
  3. I never thought i would be HIV negative again after been diagnosed in 2015, i have tried everything possible in life from one doctor to another, one hospital to another, series of tests, different kinds of medication, i had already lost hope until i meet Great Dr. OSAGIE online testimonies, a specialist in herbal medication from Africa, i contacted him (drosagiesolutiontemple@gmail.com OR
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  4. I never thought i would be HIV negative again after been diagnosed in 2015, i have tried everything possible in life from one doctor to another, one hospital to another, series of tests, different kinds of medication, i had already lost hope until i meet Great Dr. OSAGIE online testimonies, a specialist in herbal medication from Africa, i contacted him (drosagiesolutiontemple@gmail.com OR
    DROSAGIESOULTIONTEMPLE@YAHOO.COM) and he prepared HIV herbal medication for me which i took for 7days and now i am completely cured. i want to use this medium to express my gratitude to him for saving my life and curing me from HIV, for taking away all my pains and sorrows, I''m indeed grateful and i am so happy I''m now HIV negative. i will continue to tell the good news of your great works to everyone, if you have HIV or other disease contact him, Email: his email: (drosagiesolutiontemple@gmail.com OR
    DROSAGIESOULTIONTEMPLE@YAHOO.COM ) or His Whatsapp number: 2347030465649...thank you my great dr for curing me keep up your great work...

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  5. SAY NO TO AUTISM. I'm so happy today because of the wounder Dr Biodun has done with his autism herbal remedy in curing my 4 years old autistic son, it was hell for me to take good care of him because he always irritates me and i wished i never had him as a child back then he always wee on his body, eyes not straight, deaf so much more i was terrified and put all my hope in God because i have used so many hospital medications but to no avail. until this day when i was online in search of autism treatment for kids, there was a testimony of a woman testifying on how her autistic daughter was cured with the herbs of Dr Biodun i quickly massage the email address she dropped in the testimony (biodunherbal@yahoo.com) and i got a reply from Dr Biodun then i explained to him and he sent me his autism herbal medicine and gave me instructions on how to apply it on my son which i did as he commanded. Behold i watch my son changing gradually day by day while using the herbal cure on him, his voice became clearer, began to see and identify colours, making sentences and a lot of changes occurred, and i never believed that one day my son would be healed from autism embarrassment. contact him today don't be left out there is no harm in trying, believe me or not autism has a cure it is real am a living witness.

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  6. Good Day friends. Am here to share my testimony on how a specialize-healer called Dr Alabi cure me from HERPES .A great man who have the root and herbs to all kind of deadly disease.I saw his email on you-tube by a patient he have cure from HIV When i contact him.he prepare the herbal medication for my HERPES cure and also send it to me in USA via DHL, that get me cured.You can also reach he, his E-MAIL address ( dralabispelltemple@gmail.com ) or ( dralabispelltemple@hotmail.com
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  7. my partner and I have been trying for a baby for over two years now, We were going to a fertility clinic for about 5 months before somebody told us to contact this spell caster who is so powerful, We contacted him at this email; babaka.wolf@gmail.com , for him to help us, then we told him our problem, he told us that we will either conceive in February 2014 or March 2014,but after two years of trying we were at a point where we were willing to try anything. And I'm glad we came to Priest Babaka, Because his pregnancy spell cast put us at ease, and I honestly believe him, and his gods really helped us as well, I am thankful for all he has done. contact him via email: babaka.wolf@gmail.com if you are trying to get a baby or want your lover back. he has powers to do it, he has done mine

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  8. Have been suffering from (HERPES SIMPLEX VIRUS) disease for the past four years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man Dr MAGGI and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr MAGGI telling him about my (HERPES Virus) he told me not to worry that i was going to be cured!! hmm i never believed it,well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email: Maggiherbalcenter@gmail.com or call/whatsapp him +2348148487280. He told me that he also help people to cure HIV VIRUS and also help people to bring their ex lover back. contact Dr.MAGGI if you have any problem. email: Maggiherbalcenter@gmail.com.

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  9. Hi there everyone, i want to give my testimony on how i get cured of herpes virus,
    i want to thank God for sending Doctor ogbela that cured me of herpes virus,
    I have been with herpes virus for 13 years, i thank God that i am healed from this virus,
    I was 28 when I started seeing symptoms. I really don’t know where to begin…
    But I use to think that I will grow old with this virus in my body,
    because i have use so many different type of drugs, believing that i will get cured of this virus,
    but it was not cured, i do not know what else to do, i keep on believing in God that one day i will
    be cured of this deadly virus called herpes, i was Praying for healing over every part of my body.
    Praying that the blood of Jesus washes over me, and that the lord breaks the binds of any diseases,
    pains, and illnesses, I feel my life is completely taken away from me, but i still keep believing in God,
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    one day i think of going for research in google, i saw so many testimony on how Doctor ogbela cured so many type
    of disease, in my faith i believe that he will also cure me if he cured others i will also be cured, so i took his
    contact and contacted him for help, To God be the glory he directed me and cured my herpes virus that i have sick
    for 13 years, i want to give God thanks for he to send me a helper that cured my herpes virus, also give thanks to
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    you need cure, you can contact him on email: drogbelaherbalhome@gmail.com or call his phone number +2348136354191
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    May the Lord that sent Doctor ogbela to cure my disease will also cure your disease,
    thanks to you all God bless you

    ReplyDelete

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