#adenomyosis

[theotherhappyplace]

Surgery done and recovering now

Feeling a bit better already

Tmi but who cares I had to have a hysterectomy. So that's the big thing I'm trying to recover from. Thank you to everyone sending me such kind messages I can't respond to everyone individually because I'm very tired. But I read them all thank you thank you

[yrfemmehusband]

Female reproductive health terms you should know!

(terfs not welcome)

Dysmenorrhea: Period pain that isn't normal, i.e. any pain more than Mild cramping.

Dyspareunia: painful intercourse

Oligomenorrhea: lighter, shorter menstrual flow.

Menorrhagia: heavier, longer menstrual flow.

Ovarian cysts: a mass on or in one's ovary, can be resolved on its own, or can remain and cause complications such as a rupture.

Polycystic ovary syndrome: a chronic condition causing cysts to reoccur on the ovaries and enlarging them. Symptoms include:

Irregular periods

hormonal imbalance

facial hair

weight gain

painful periods/ ovulation

infertility

People with PCOS are at higher risk for endometrial cancer, type II diabetes heart problems and high blood pressure.

Endometriosis: A chronic condition in which a tissue similar to, but different than, the endometrial lining grows outside of the uterus instead of inside. During menstruation this tissue sheds and has nowhere to go, thus irritating surrounding organs.

Symptoms include:

Irregular periods

Dysmenorrhea

Widespread pain

Painful ovulation

Vomiting, fainting, chills, sweating, fever and brain fog during menstruation

Infertility

Severe bloating

This also puts people at a higher risk for endometrial and ovarian cancer. There are four stages to Endo as it is a progressive disease, with 3/4 being more severe. The average time it takes to be diagnosed is 7 years.

Adenomyosis: A chronic disease similar and comorbid to endometriosis in which a tissue similar to the endometrial lining grows inside of the uterine wall. Symptoms are nearly identical to endometriosis but more difficult to detect.

Many people are diagnosed post menopause, by fault of the medical system, but it can and does develop much before then.

Ovarian cancer: cancer of the ovary(ies).

Endometrial cancer: cancer of the endometrium, the inner lining of the uterus.

Endometrial cyst, or chocolate cyst: cystic lesions from endometriosis.

Tilted uterus: the uterus is positioned pointing towards the back or severely to the front of the pelvis instead of a slight tilt towards at the cervix. Can cause painful sex and periods.

Pelvic floor dysfunction: inability to control your pelvic muscles. Comorbid with many things and is highly comorbid with endometriosis. Can cause pain and incontinence.

Vulvodynia: chronic and unexplained pain at the opening of the vagina.

Interstitial cystitis: a chronic condition where cysts form on the inside of the bladder and urinary tract and cause symptoms similar to that of a UTI.

Pre-eclampsia: a condition occurring in pregnancy where the blood supply between the fetus and the pregnant person is affected and can cause irregular blood pressure, swelling, and in more severe cases headache, nausea and vomiting, a burning sensation behind the sternum, shortness of breath and potentially death if untreated.

Endometritis: an infection or irritation of the uterine lining. Is not the same as endometriosis and is treatable but can cause pain, bleeding, swelling, general discomfort and fever, and more.

Pelvic inflammatory disease: an infection of the reproductive organs

Ectopic pregnancy: a pregnancy that is attached to the outside of the uterus. Can be fatal if left untreated.

There are many more I could probably add but if you see something missing, please add it!

[newhologram]

Just fyi, I document my fight for healthcare in case I drop dead. So everyone will know exactly why. Because so many sick people are left to fall through the cracks to die completely preventable deaths all the time. I’m not immune to it.

[deliamount]

A desperate plea from a Welsh neuro spicy bookworm

https://gofund.me/93bbe404

Hi all! It’s been years since I’ve used this platform but I’ve been around the block during my time. Mainly in the phan and Call the Midwife fandoms.

This may gain no traction as I am a dinosaur who has no clue how this platform works any more but I’ve created a go fund me for my endometriosis and adenomyosis surgery

This is not only for a much better quality of life for myself but also to raise awareness of what a truly awful disease this is and the lack of understanding and support around it. Shoutout to any girl who’s ever been told to use a heat pad or just get pregnant!

There are only 2 endo specialists in Wales and I have been rejected from seeing them on the NHS due to a insane postcode lottery so if you can support either with a donation or a share I would be super grateful

Love and cwtches to you all ❤️

[chonky-goth]

Lidocaine patches are amazing for chronic pain 💕

[james-p-sullivan]

I really think we need to start talking about the stigma around hysterectomies and their place in the treatment for the symptoms of endometriosis.

Something I see often is the phrase 'hysterectomies don't cure endometriosis', which is very true, but do you know what a hysterectomy can cure?

Pain.

And you know the pain I'm talking about. The gnawing, all encompassing agony that surrounds our entire lives. The one that keeps you from going back to school, or uses up all of your sick days and vacation time from work combined, the one that leaves you dry heaving for hours until you pass out on the bathroom floor. That pain. There's truly no describing what it's like until you're living it.

And I cannot describe to you how free I feel knowing I will never have to suffer through that ever again.

If we continue to talk about our pain journeys we can end the stigma against hysterectomies. It will never be a cure-all, but remember that you are not a baby machine, you are a human being who deserves to live pain free. And I'm telling you, it's possible.

[gaynpc03]

I'm not a "endometriosis warrior"

I'm not fighting endometriosis, she's not fighting me

We're locked in an eternal standoff. She's got her hands around my ovaries and all my vital organs and I've got my middle fingers up telling her to fuck off (and threatening to cut her off myself)

[hypothermiaa]

shout-out to my chronic illnesses for destroying my life in irreparable ways and being incapable of sustaining a foreseeable future

[after-the-line]

And trying to go to work to pay for this body is also impossible lol

[mommyisdownwiththesickness]

I just need to vent…read or don’t….its okay either way.

I feel like I have the worst luck medically. I know people have it a lot worse than me but things just keep piling up.

I feel like it started when I was 3 and had asthma. After that at around age 13, I had thyroid problems that made me an emotion wreck and roller coaster. At 14 I got diagnosed with type 1 diabetes. I rode those waves for a while until I was 20 and got epilepsy. Next, I had to have a colonoscopy that showed I had colitis and at 24 I was diagnosed with multiple sclerosis. After having chemo infusions for my MS my IGG levels went low and now o need an infusion for my low IGG levels. Finally, I went to the OBGYN with some abdominal pain and I was diagnosed with adenomyosis.

I have had my fair share of the shit stick with my health. Then since I was about 14 years old I have been struggling with depression and anxiety. I have been traumatized with every sort of abuse imaginable (physical, sexual, verbal, emotional) and even medical trauma.

I can’t go into any type of doctors office without my blood pressure spiking up to pretty much 140/90.

I don’t know what lesson the universe is trying to teach me but I’m about ready for my next life already.

[blackforrestpunk]

Hello, just a little life sign between the scheduled postings.

Surgery was fine. I am alive.

They ripped out what shouldnt be in me.

But still a bit sleepy.

Next goal, shitting without bleeding 😬😬😬

[newhologram]

So many people say adenomyosis hurts way more than childbirth. I’m just supposed to sit around casually and normal like I’m not in more pain than someone in active labor. Okay.

[lunar-whispers]

This is the thing about chronic illness that I keep trying to wrap my head around; it's chronic.

The horrors persist.

The horrors will continue to persist.

I've run out of medical interventions, I've run out of options. And at the same time I know I can't keep running away from my life. It's an excuse, and a valid one at that, but I'm tired of it derailing my life. But I have no choice.

As this disease perseveres in my body, I will have to persevere with my life in spite of it.

I am strong and resilient, and this is a good thing, but I wish I could be soft too. A soft version of me died many years ago. Years before the inflammation and pain took over my body. I wonder plenty about causation and correlation but I don't believe it's really of any consolidation now. Thinking about it isn't helpful.

I am grateful my condition is periodic. At least I get breaks. Others aren't so lucky with their medical misfortunes.

Although I generally endeavour to keep a zen mindset, a little 'woe is me' is good for the soul, I think. It can be cathartic. I'm allowed to shout out to the universe and to the void that this sucks. Because it does. It fucking sucks.

[justablobfish]

So I've had a laparoscopy on Wednesday - that's a minor operation where the surgeon cuts into your belly. In my case to see if I have endometriosis.

And it turns out I do indeed have endometriosis, and, more importantly, adenomyosis, which is kinda the same thing except the "bad" tissue is inside the uterus rather than outside of it.

I've been back home since Friday morning and everything is healing well and practically not hurting anymore.

And now I finally know what's wrong with me - and that there IS something wrong with me. That my constant exhaustion and tiredness, my chronic pain, my being unable to do so many things and my struggling to do so many others does have an actual reason, an actual source. People will finally have to take my problems seriously. And maybe, there's even something to be done to improve things.

I can't even begin to say what an incredible relief that is. What that's doing to my emotional state. How incredibly happy and hopeful I am. Or rather, how incredibly defeated and hopeless I've been until now, which is only becoming properly apparent now in comparison.

At the same time I'm also angry. It's been a damn long journey to get to this point. And yet I know that in comparison, I'm fairly lucky and got my diagnosis relatively early. Many others need to search and fight to be taken seriously a lot longer than I have.

Research on endometriosis has made great steps forward in recent years, but there's still a lot of details that we straight up don't know. Starting with what causes endometriosis and is it something you're born with or something you develop at some point?

I guess I just...needed to yell all that out into the void.

Maybe some day I'll make a post about all the things I learned along the way and what resources would have helped me if I'd already known about them at the beginning of my journey.

[drafthorsemath]

I heard back from my doctor and whoo boy

The ultrasound shows I have a small fibroid and possible adenomyosis which means one of the treatment options is off the table. She wants me to get an endometrial biopsy to make sure there's nothing more sinister in my uterus. I had one done 15 years ago. It was suggested by my (at the time) new doctor 5 minutes before it was done without any pain management or sedatives. It hurt so bad I nearly kicked him. So my new doctor said I can take ibuprofen and she will give me Xanax, but I told her I can't take ibuprofen so what should I take and btw I've had vicodin for cramps before so can we try that and skip Xanax? We will see what she says. I also informed her I've already had two panic attacks since she first mentioned getting this biopsy done again.

Her message also said my options are birth control pills, a particular IUD, or hysterectomy. I responded that I will under no circumstances get an IUD. I asked how the birth control will be different from the ones I was already bleeding through and how long do I have to try them before it's clear they aren't working. We will see what she says. I know a hysterectomy is a major surgery, but I am also so sick of this. I'm so tired of hormone pills making things worse.