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Grieving a Life You Cannot Live

I don’t think I’ll ever stop grieving. Yearning.

I am no longer in remission for lupus and due to this many other health complications have risen up. My pain level is at about an 8/10. And now, I, a 26 year old female with no children, will need to have a hysterectomy that has been scheduled for November. I am absolutely heartbroken.
My hysterectomy is tentatively scheduled for November pending INR results upon a closer date.

Lupus has taken everything from me at one point or another. Every penny I have for these specialists and procedures. My ability to walk. My ability to have children.

All that is left is an empty shell of the person I yearn to be.

I try to hold onto some sliver of hope- a purpose.
I try so hard to hold onto hope.

But days like today when I was just told with finality that I will never have children…

My partner, Nick, is a saint. He has stayed by my through every doctor, through every diagnosis. He has loved me through the dark.

And right now, in this very moment, I have a choice.

I can choose to spiral and tell myself that yes, Nick is doomed if he stays with me and I can never do anything to help me get through my lupus flare. I could lay in bed in a vegetative state and wallow in self pity for another day. I could give up.

Or. I can remind myself that I matter very much. That the world is NOT better without my in it. That I am not a burden. Not on my mom. Not on my partner. Not on society. I can remind myself that this is just another part of lupus- something I have to live with.

I choose the latter. I don’t know why I was chosen to be as sick as I am. But maybe it’s not a curse. My life doesn’t stop just because I am sick. And I will mourn every single day that I cannot have children of my own. And I will cherish Beyla (my Bernese mountain dog) all the more.
#Lupus #AntiphospholipidSyndrome #Hysterectomy #SjogrensSyndrome #Endometriosis #Infertility

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Care to share your experience with having a hysterectomy done. Very nervous for mine in August .

#Hysterectomy .. 4 years ago I got an ablation done they went and cauterized as well. they ended up taking a polyp out. First year seemed okay I was still lightly bleeding. After that it just seemed to fluctuate where I was having random periods a lot sometimes three to four in a month.. 6 months ago I had a conversation with my doctor due to the extreme amount of pain that I was experiencing. I don't know if anybody has been through it before it was really weird every time you would have my period it was almost as if I was having a kidney or bladder infection but all of my tests and everything came back negative.. my doctor told me to try to hold on and didn't want to do the surgery six months ago because they're rather options.. realistically there was no other options because I wasn't going to have kids anymore. I had my tubes tied when I was 23. I was a young mom. After I had my third one I had more complications than I really wanted to deal with. It wasn't worth the risk to entertain any more children.. I'm just wondering what other people's experiences were through the hysterectomy piece . They will keep my ovaries as they are fine.. I'm just a little terrified of surgery..

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Mortality #cowdens #Hysterectomy #Thyroidectomy #colon #breast

I lost a patient tonight. Not unusual in a busy ER. This was a fairly young woman with stage 4 uterine CA . A family history of breast, colon and thyroid cancer. And a large head. All the hallmark signs of cowdens. She was conscious, coherent and talking. Thanking everyone for helping her. She was in agony. Now she is gone. I truly believe to a better, happier place. But I don’t like to face my own mortality #cowdens #Cancer #pe #Cancer #Cardiac arrest


Processing Things

I woke up yesterday feeling good after having slept well, something that doesn’t happen often. Then I received a message and subsequent phone call from my doctor regarding the ultrasound I had had done Thursday… and I was floored.

I am 37 years old and I likely will have to have a radical hysterectomy. Uterus and ovaries removed surgically. Menopause at 37… possible hormone replacement therapy but probably not. Mood swings ontop of my already unstable bipolar moods. Not to mention 6-8 weeks of unpaid time off my work.

At first it didn’t bother me at all. Well, you do what you need to do of course and it beats being in severe pain. But to know I can never have any more children (my husband and I were holding out hope for one in vitro), to feel like less of a woman… I don’t know if I’m ready for that or if I’ve even begun to process that idea.

The more I say it doesn’t bother me the more it comes to the forefront of my mind. I’ve been journaling and talking to my husband (who assured me that he will not see me any differently) and yet I still found myself crying yesterday over this. Not long, just a few tears but it’s like either I don’t think about it at all or it’s all I can think about.

I have a follow up with my OBGYN on Monday to go over what my options are. Hoping for some support from here and maybe someone young like me who has had a hysterectomy. How did you process it? What did you feel? How did you respond to the loss?

I honestly don’t know what I feel or how to feel.


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I had a robotic hysterectomy 2 days ago and I am so happy! I’m only 24, but the constant pain and bleeding have made it so worth it!
I designed and crocheted this angry uterus for the occasion!
#PolycysticOvarySyndrome #EhlersDanlosSyndrome #Hysterectomy #zebrawarrior


Feeling down and depresses

I am feeling somewhat down and depressed plus anxious. I joined The Mighty a few days ago and I'm just now feeling more comfortable telling my story. In 2006 i was diagnosed with Leukocytoclastic vasculitis. I had purpura all over both legs and it was very painful. It took a few months but I recovered and was relatively healthy for several years. Then as soon as I hit 40 it was like my health fell off a cliff. I was extremely tired all the time, depressed, and had night sweats. My doctor repeatedly checked my hormone and thyroid levels but they kept coming back "normal". Then I went to an ENT to get my ears cleaned. During the exam he felt my throat and said my thyroid was enlarged. I had an ultrasound and my thyroid levels checked, again. Finally I was out of range and I started synthroid. I noticed over the next few months my symptoms got worse and my neck was getting bigger. I had another ultrasound and talked my doctor into increasing my dose. The ultrasound showed I had nodules on my thyroid so he sent me to a pathologist who I well known around me for only testing the thyroid. I had a fine needle biopsy which came back benign. However, he said he could tell by looking at my thyroid I had hashimotos and sent a note to my doctor to test my TPO. It came back way, way out of range at over 800. My doctor said I had hashimotos in the past. By this point though I had been doing my own research and new that wasn't correct. Plus I went to an endocrinologist who was concerned I not only had hashimotos but graves disease too given how large my thyroid was. The graves test came back inconclusive. Meanwhile, I was on a hormone rollercoaster plus I developed shingles. I wound up in the hospital a few times and was taken seriously once till shift change where the new doctor brushed me off and sent me home. My primary care doctor was not happy the hospital brushed me off because I had chest pain. I saw a cardiologist a few times, was taken off synthroid then back on because my thyroid levels were all over the place, then after about 6 months everything calmed down and I was stable. I ended up changing primary care doctors since I couldn't get the old doctor to believe I had hashimotos plus he wouldn't check my iron levels. The new doctor checked my iron at my first appointment and found my ferritin level was very low but never tried to figure out why. Fast forward a couple of years and I start having severe pelvic pain. After seeing 6 doctors in the span of 2 months I finally get diagnosed with adenomyosis and fibroids. Nothing was helping with the pain and I had a total hysterectomy only keeping my ovaries. I woke up from surgery and the pain I had been in daily for several months was gone. Then about 7 months later the thyroid pathologist told me my thyroid was getting so enlarged I should see a surgeon about getting it removed. The same week I severely sprained my ankle and lost my insurance. Two months later with new insurance and still dealing with the sprained ankle I went to a pain management specialist and he sent me the physical therapy. By this point it was December so the holidays interfered with starting therapy and my Achilles tendon quit working and I was on crutches. Meanwhile, I couldn't work because I worked in catering and had a heck of a time getting on disability. I ended up having to quit my 2nd job because I just couldn't walk and be on my feet as long as that job required. Over the next 6 months I faithfully went to therapy and doctor appointments. I wound up in a walking cast at one point, sprained my ankle again, and had the big toe on the same foot sprained after someone walked right into me and stepped very hard on my foot. This caused me to go on workers compensation because it happened at work. Meanwhile at the same time my landlord decided he didn't want to renew my lease so I had to fight him in court and look for a new apartment. Oh and my insurance decided I had enough physical therapy so they cut me off. This brings us to January 2020. My whole family got sick in January with what we now know was covid, we didn't then. While I was still recovering we moved. I was able to return the physical therapy for a brief period till lockdown in March. I had a few virtual appointments then I was discharged about a month later. In September I went to a new endocrinologist and she looked at my records, ordered a new ultrasound. She confirmed my thyroid was way to large to even figure out what was thyroid tissue and what was nodules. She sent me to a surgeon who immediately scheduled me for surgery for a total thyroidectomy. I recovered from that, my anxiety spiraled way out of control and my husband took me to the emergency room one day. That got me into the counseling and with a psychiatrist right away and I'm on medication. With my anxiety getting under control of course something else had to start. In October I started having what I think are vasculitis flares. I tell my doctor who prescribed gabapentin and also started me on a statin due to high cholesterol because genetics. I am allergic to dairy, have gluten intolerance and overall already eat fairly healthy. So I started both new medications and immediately break out in hives over Thanksgiving. I stop both new medications and the hives don't go away. So after 2 rounds of prednisone they finally go away. The doctor wanted to wait a few months before trying anything new again. Meanwhile, the pain my legs gets worse but mostly tolerable. Then one day in February I'm doing normal housework and halfway through the day I am in so much pain I can't walk. I'm laid up in bed for a week. I make an appointment with a rheumatologist who I saw last week. He was really thorough, nice, and clearly explained his thoughts. He doesn't think it's the vasculitis flaring up and runs A LOT of tests, 12 vials of blood and a cup of urine. He briefly mentioned fibromyalgia. When I Google fibromyalgia I do check a lot of boxes for it. He said expected all the test results to come back negative but they didn't. I did what I know you're not suppose to do but I Googled the test results that came back out of range and the only things I can speculate is maybe I do have fibromyalgia, the vasculitis is flaring, and I may have a mild case of a hereditary blood disorder that is in my family, my dad had it and several cousins have it. It's spherocytosis. The only reason I speculate on the fibromyalgia is the soles on my feet really hurt and that does not go with vasculitis. I'm currently learning that I can't push myself or I over do it and wind up in a lot of pain. My feet constantly throb. I am starting to pace myself. I see the rheumatologist the first week of May to go over the test results. So that's my story, sorry it's long.

#Anxiety #hashimotos #Hypothyroid #Adenomyosis #Hysterectomy #HighCholesterol #Undiagnosed #Fibromyalgia #LeukocytoclasticVasculitis #ChronicPain #MultipleDisabilities #Spherocytosis #ChronicPain


#EDS #Hysterectomy #Advice

Thank you for this thoughtful piece! We all need to check ourselves before asking or stating assumptions about other people because of the way they look/the gender they present as. As a fellow EDS’er who also has a ton of comorbidities (CRPS, IC, fibromyalgia, etc.) I have stage iv endometriosis and it’s on my abdominal wall. They need to remove my belly button and some of my abdominal wall. They want to do a hysterectomy as well, but I’m terrified. How does it affect your body, sex, and pain levels? I hope your “rational brain” has taken over by now…I’m still looking for mine!


HRT query #Hysterectomy #menopause

Has anyone who has had a radical hysterectomy been prescribed Kliovance?
I've read online this is usually given to women who still have a womb??? Is it still safe to take?

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Hoping for answers soon #Endometriosis

I’ve been having issues with my women’s health for many years now. All women on both sides of my family have a history of fibroids and endometriosis. All of the women in my family have had a hysterectomy and went into early menopause because of it. Yet it’s taken me more than ten years to be heard by doctors. I have a specialist appointment in June and I’m hoping that I’ll get some answers.

Endometriosis affects 1 in 10 women, yet it can take an upwards of 10 years to be diagnosed. Endometriosis isn’t just a bad period, and pelvic pain isn’t normal.

It might be the end of Endometriosis Awareness month but that doesn’t mean we don’t keep fighting for advocacy and fighting for our doctors to listen to us. Sending love to all Endo warriors out there and all others who are trying to find answers about their women’s health, keep fighting.

(Artwork done by myself on IPad Pro)

(Pic ID - shot of Amelia’s stomach and pelvic area with a striped shirt on and black pants. With a drawing over the top of a uterus)

#EndometriosisAwarenessMonth #ChronicFatigue #WomensHealth #Disability #Hysterectomy #PolycysticOvarySyndrome #Adenomyosis #Infertility #InterstitialCystitis

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Feeding the freezer #nourishmentbistro #Family #Caregiver #cowdens #ASD

I’m not sure if I should be proud of my hard work or disgusted at my need to work so hard to feel worthy . Yesterday I made twenty containers of soup, some cooked veggies and some other stuff. Today I made home made tomato sauce out of a CASE of tomatoes and I cooked four chickens, a pot of meat balls, shepherds pie (with ground chicken)
And a bunch of chicken burgers #feelingunworthy #Hardwork #busymom #nobusiness #Postop #Hysterectomy #selfloathing