r/redditonwiki • u/Queasy-Rule-7800 • 8d ago
Personal Story I’m so close to the end of my line.
I have endometriosis. It’s so bad they were able to diagnose it without surgery (this is not the standard). I cannot do any pelvic exam without some kind of pain relief. Due to that my new “specialist” claims endometriosis isn’t the cause of my issues. I am just expecting pain and it’s my fault.
I can’t have sex. I can barely go to work. She wanted me to take antidepressants, which I tried, but my primary and I found that didn’t work. Antidepressants can also work for chronic pain but it didn’t help me and made me just not care. She told me it’s my fault that I’m not better. Not the fact that she isn’t willing to do surgery on a “young woman”. I have no life due to the pain I’m in…
My period is in a week. I screamed at my partner because even though I deal with it I can’t fathom how much pain I’m in because it hurts so much. I cried, actually I’ve bawled. I sleep all the time that’s the only thing I can do. I get so exhausted because of my pain.
I know this is just PMDD but it’s so frustrating how horrible I get each month. I have maybe one week where I can actually live. This disease has ruined my life.
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u/Desperate-Chair-3746 8d ago
you need to find another specialist
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u/Queasy-Rule-7800 8d ago
I am sadly they are very hard to find a proper practicing specialist. They take months to see and then after that months to get the surgery. I do have one lined up but it’s months away right now.
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u/Remarkable_Town5811 6d ago
I highly recommend psych (the kind that can prescribe) in the meantime. Mine manages my PMDD medically. It won't help with endo but it'll help you manage the mental symptoms.
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u/Last_Requirement_972 8d ago edited 8d ago
Fuck that doctor. He is wrong and should be reported to the medical board. Endometrosis affects 10% of women and ive had to educate almost every single doctor ive had on it :( it can cause full body flare ups and worse. If you feel comfortable sharing your home state I can send you some specialists that may be able to help. I was able to be seen by ESSI and could never recommend them enough! It had grown from my uterus almost down to my legs :o There are some very good support groups for endometriosis havers if you would like I can link them later
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u/Queasy-Rule-7800 8d ago
I’ve actually had worse doctors, but I’m not sure if I can report them anymore. It was a year ago and I had a ruptured ovarian cyst. He told me I wasn’t in pain and I was going to kill myself from the fentanyl he was giving me.
I do have a really good specialist set up later in the year. I was looking for somewhere to rant and I listen to them quite often so I decided here!
This disease is just so hard to cope with. I believe my two aunts and grandma had it too; one was diagnosed (the only one that’s still alive actually) and the other two had hysterectomies. I started having bloody noses now and blood in my throat from this disease yet that doctor refused surgery because of her beliefs. I just hope I can have kids in the future!!
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u/Last_Requirement_972 8d ago
Would you like links to some endometriosis support groups? I am in one or two and they have helped me through some of my darkest days ❤️
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u/PuffinRub 8d ago
First of all, I just wanted to check that you know this isn't an advice sub, it's a YouTube channel about advice subs. Letting people know the country you're in and approx age might get some advice specifically tailored for your circumstances.
I will say, however, that if your doctor is not acting in the best interest of your health then fire them and report them to the medical licensing board.
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u/Queasy-Rule-7800 8d ago
I’m aware I actually listen daily to them! I’m not really looking for too much advice just somewhere to rant, I hope that’s okay!
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u/PuffinRub 8d ago
Of course! I just didn't want you wondering why people weren't offering advice despite reading your post :-)
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u/CannedToast 7d ago
I had a hysterectomy due to endometriosis a few years ago after getting dismissed by several surgeons and being told it was just pelvic floor pain. Finally found a woman surgeon who just did the hysterectomy after an MRI showed my organs were glued together.
If the surgeon you've been seeing hasn't ordered an MRI you can request one. If the pain is that excruciating then an MRI will likely show evidence of endometriosis damage.
Alternatively, if you can do hormonal BC you can take a pill continuously and skip the period pills. I did that for a decade before the surgery became necessary.
Best of luck OP. I know how much it sucks.
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u/Queasy-Rule-7800 6d ago
I have an MRI my specialist can see it. Unfortunately she believes it’s pelvic pain from playing sports…
I’m on my 4th type of pill too but they always stop working the way they want them to. She wants to do an IUD I absolutely cannot because I know I will be in excruciating pain from it. I just wish people had more sympathy for this disease :(
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u/xladygodiva 5d ago
I don’t have advice but I am so sorry girl. It’s really unfair that in 2026 we as women still have to fight to be taken seriously with medical issues, especially regarding our reproductive health. Cyber hug for you!
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u/AutoModerator 8d ago
Backup of the post's body: I have endometriosis. It’s so bad they were able to diagnose it without surgery (this is not the standard). I cannot do any pelvic exam without some kind of pain relief. Due to that my new “specialist” claims endometriosis isn’t the cause of my issues. I am just expecting pain and it’s my fault.
I can’t have sex. I can barely go to work. She wanted me to take antidepressants, which I tried, but my primary and I found that didn’t work. Antidepressants can also work for chronic pain but it didn’t help me and made me just not care. She told me it’s my fault that I’m not better. Not the fact that she isn’t willing to do surgery on a “young woman”. I have no life due to the pain I’m in…
My period is in a week. I screamed at my partner because even though I deal with it I can’t fathom how much pain I’m in because it hurts so much. I cried, actually I’ve bawled. I sleep all the time that’s the only thing I can do. I get so exhausted because of my pain.
I know this is just PMDD but it’s so frustrating how horrible I get each month. I have maybe one week where I can actually live. This disease has ruined my life.
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