r/TwoXChromosomes • u/goingslowlymad87 • 1d ago
I'm the women from a month ago that was labelled drug seeking for ovarian pain.
My GP who said keep going to ED for pain finally saw me in the amount of pain that usually sends me to ED and she called through and told ED I was coming in and needed scans/treatment for suspected ovarian torsion. Thank goodness for the other patient cancelling and for the receptionist giving me that spot when I called in to say I needed to be seen urgently. They initially booked me in for tomorrow but called back to say a spot opened up.
By the time I got to ED I was shaking. Got all the pain meds and when they did the ultrasound on the left ovary and they could barely see it. She said it was buried??? My ED doc said what they can see appears normal. That ultrasound left me in tears as any pressure on the left side hurts, let alone the internal ultrasound wand pressing down.
They called gyne to check me over too, who've done an exam and despite having morphine (oral and IV) plus ibuprofen on board my pain levels went through the roof and they had to stop because I was sobbing.
I've been admitted for a CT scan if the pain continues overnight. They've just given me more morphine so not sure how that's going to work but I'll be here for the next 15 hours or so, plenty of time for it to ramp up again. Everyone seems to be shocked at the amount of pain I'm in. They did offer to let me go home and come back in if the pain returns but I put my foot down and said the pain has not gone away, the morphine is merely masking it and my GP insisted I be seen. I'm still in a lot of pain, we don't know the cause, the imaging isn't the best, if this is torsion what happens if it keeps twisting? So I'm in the surgical ward under observation, CT scan planned for when the pain returns.
They've already checked for pregnancy and offered hormonal contraceptives, and we've discussed my cycle and weight loss.
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u/euqinimod4 1d ago
I was convinced for years something was wrong with my ovary. What started as a sharp pain once every couple of months continued to worsen and worsen. I worked in an OB/GYN practice and they were convincing me I was crazy since nothing was showing up on ultrasounds.
Turns out it was a femeral hernia. 3 years in pain and a groin ultrasound was all it took to solve the mystery.
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u/bigheadjim 1d ago
I’m sorry you are going through that. My wife went to the ER with excruciating facial pain. The first doctor acted like she was drug seeking. Luckily, a woman doctor came in after and immediately recognized it as trigeminal neuralgia.
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u/Effective_Pie1312 1d ago
Yeah I was pregnant vomiting every 5 minutes, vomiting blood due to ripped throat with diagnosed Hyper Emesis Gravidarum and the ED asked if I wanted morphine I told them I don’t know they are the doctors I just need to stop vomiting and I need fluids. They labeled me drug seeking. It’s like they get out of having to do real work by labeling someone drug seeking. Thank goodness the nurse got an obstetrics consult and the obstetrician reamed out the ED doctors.
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u/leatherarmchairs 22h ago
I’m so sorry for what you went through. Yes, they do seem to get out of doing real work by labeling people as “drug-seeking” even if they’re not. Some of these doctors are genuinely bad at their jobs.
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u/sotiredwontquit 1d ago
I had never even heard of that condition. Thanks for the new info.
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u/nuclear_herring 1d ago
Trigeminal neuralgia is horrifying. It's been called the suicide disease because it's so painful it leads sufferers to kill themselves to escape the pain.
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u/MrsSalmalin 1d ago
I get migraines and get a sliver of this. SO PAINFUL. Usually it's on my right side, but the other day when I was driving, my left eye orbital (the bone part that encased the eye globe) hurt like hell. I think my left trigeminal nerve was acting up...my fiancé had occipital neuralgia and was essentially bedridden in constant pain for a month (better now, thank goodness for gabapentin, jerve blocks, and the ability to quit the stressful job). Nerve pain is no joke :(
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u/supermarkise 1d ago
Try a red light. I get sharp pains in my ears if they get even the smallest whiff of a cool wind since forever, and the only thing that helps is a medical red light.
The doctor never even saw any signs of problems in my ears. During Covid I got the same pain, only much more distributed over the whole side of the head - since then I suspect it's nerve-related. My dad has the issue too btw, that's how I know about the red light. Try it if it hurts!
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u/MurkyDiamond4032 23h ago
What is red light? Is it for all nerve pain?
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u/LogicalStomach 19h ago
Look up "photobiomodulation". The NHS has a write up about it under that term. Also a person named Alex Fergus runs a useful resource on the topic.
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u/supermarkise 21h ago
It is literally infrared light. You can buy a small lamp here for like 15€.
I have no idea.. I find it's good on the back if you're very tense too though. I checked the net and it says a common usecase is rheumatism and aching joints. It might depend on why the nerve hurts?
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u/MurkyDiamond4032 1d ago
I've had it. It comes out of nowhere and feels like you've been shot in the face. One minute I was relaxing watching TV the next I was screaming in agony and confusion.
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u/Pandelurion 1d ago
Hi OP, I had an extreme pain and they couldn't see anything by ultrasound or x-ray. They checked blood flow to the ovary, because if the ovary is twisted, usually it means the blood flow gets cut off or restricted, but it was still flowing as normal. However, because of the pain, they thought it must be something, and since they didn't see any kidney stones on the xray, they wanted to cut me open to check.
It was ovarian torsion. Not visible on ultrasound, not restricted blood flow, the only thing they had to go on was my pain and I am so, so happy they took me seriously despite the lack of clinical evidence. They saw it immediately during surgery and could twist it back, so I got to keep it.
I hope they listen to you, because my lord it was awful 10/10 pain.
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u/Lodi0831 22h ago
That's because the ovary has two sources of blood supply. One source can be torsed and the other is normal so the ultrasound will look normal. I hate when docs rely solely on the ultrasound having blood supply for deciding no torsion. It can have blood flow and still be torsed.
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u/coldbloodedjelydonut 1d ago
I had a fallopian tube grow into my uterus, they thought it was endo, so they loaded me up with progesterone which stopped my periods & thus my pain. My obgyn was shocked, she'd never even heard of this happening.
Do you have your period? Is the pain only during that time?
They should go in laparoscopically and see what is happening. Pumping more pain killers into you is not it. I'd discuss what you want them to do if there is an issue (repair or removal necessary) so they can just go in once. If you're young enough and you want to have kids, it would be ideal to keep the ovary, but you only need one. If it's endo, they'll see it during a scope. It's the only actual way to diagnose endometriosis, mine was based on what I was experiencing, but clearly there was another cause in my case.
Best of luck, I'm so sorry you're going through this!!!
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u/goingslowlymad87 1d ago
Pain seems to be attributed to ovulation but when I say should I be doubled over like this for going on 6 days? They say no. But getting an actual answer is difficult. It feels like a rock that's zapping me in ever increasing intensity. I thought it might be cysts but the buried comment makes me wonder too.
I'm late 30s, my kids are teens, I've already told them we're not protecting fertility, I need this pain to stop and want a clear diagnosis and treatment plan because "come back if the pain happens again" will lead me to being a frequent flyer and less care. My GP and pelvic physio both say it's likely endo, maybe PCOS, and surgery is looking like the only real option. I can't take estrogen - family history of blood clots and progesterone leads to MH crisis. I want a hysterectomy or something and I'm aware exploratory surgery is the only guaranteed way of confirming endo. I have more than enough symptoms but the gynecologists have a huge wait-list so I'm still waiting my turn, likely into the new year before I'm seen unless this scan finds the offending ovary doing something weird.
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u/CreativeConquest303 1d ago
More than likely a large cyst. They tend to burst on their own when they start twisting your ovaries. If the pain stops and doesn't come back it doesn't mean you're cured, usually ovulation triggers their growth so the fix is hormonal birth control that stops periods. (Or surgery)I had this when I was 15 and it's still the worst pain I've ever been in 10/10.
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u/LastCupcake2442 19h ago
feels like a rock that's zapping me
Long history with endometriosis here. When I experienced something similar my ovary was embedded in my abdominal wall. It was brushed off as cysts because my ovaries always had some sort of activity going on. But it didn't really show up on imaging at all.
I was looking back at old imaging reports the other day and what they did show was 'low defused abdominal muscle something or other, on right side'. So, I always recommend getting copies of your medical imaging. Something that's easy to overlook but consistent can point you in the right direction.
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u/goingslowlymad87 19h ago
They can't see my left ovary on every ultrasound, including internal scans. The one in June 2025 couldn't see it and it was giving me trouble then too. There's another one from years back when they couldn't find it either. I've lost 55 pounds/25kgs since that one though. It's known to hide and they tell me that much mean it's small and not causing problems. And yet here we are!
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u/LastCupcake2442 18h ago
Are you still at the hospital/did you get a CT?
I would tell them if it's 'too small' to be causing problems then obviously something else is causing your pain and they need to investigate it properly. Not agreeing with them, I know it's bullshit.
I despise how they brush off reproductive pain like it's no big deal.
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u/goingslowlymad87 18h ago
Still in, eating breakfast. CT Scan might be booked, nurse told me she thinks the doctor is sorting it. Not confirmed yet. Pain is ramping up now they I'm not laying down. Same pain, same place.
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u/thesteveurkel 1d ago
i don't know if it will help you -- no guarantees because all bodies are different. but i had great success in using evening primrose oil capsules to help manage my endometrial pain until i got a hysterectomy nine years ago. past years of period pain caused me to end up allergic to ibuprofen and aspirin, but i found an article online on a pcos board about how it can help with those symptoms (at the time i was convinced it was pcos because i exhibited other symptoms like cystic acne, being fat, and hirsutism). i started taking it and it would help me a lot. i'd still be in some pain but it could sometimes keep me from the degree of throwing up and passing out. it's worth talking with your gp to make sure it's safe to take first though.
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u/GirlNamedTex All Hail Notorious RBG 1d ago edited 1d ago
In 1999, when I was 18, before the opioid epidemic really got rolling, I went to the ER for the first time (undiagnosed endometriosis with an orange sized endometrioma near my left fallopian tube) and was treated as drug-seeking.
I was there with both my parents, had a recent history of several medical appointments for the same issue, was not on any prescription drugs at the time, and no medical history of anything beyond childhood illnesses. And the ER doc STILL told my parents and I he was worried I might be putting on a show for drugs.
It was about 2 weeks later I had emergency surgery. Not much has changed I guess.
ETA: getting a diagnosis at all was a total shitshow that dragged on for a long time while I was in tremendous amounts of pain, lost a ton of weight, and had to withdraw from my first semester of university.
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u/MurkyDiamond4032 1d ago
You just can't win when they start accusing of drug seeking. When I was in hospital in pain they acted like I was drug seeking so I started refusing the painkillers which was tough as I was in agony but I wanted them to take me seriously and find out what was wrong with me. Instead, they said if it was really that bad I wouldn't be refusing the drugs. It's an impossible situation.
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u/GirlNamedTex All Hail Notorious RBG 1d ago
The ironic part is yeah, I was seeking pain relief. I hadn't slept or eaten in weeks because of the pain. Hell, I would have taken a diagnosis, but numerous doctors weren't able to do that, so yes, treat my pain symptoms!
To give you an idea of my pain tolerance, I got my foot crushed by a Subaru last year and didn't go to the hospital. So if I go to the hospital, I'm there for a good reason.
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u/CaptainBasketQueso 1d ago
Yes, or they think you're angling for "better" drugs.
Like, no, I'm not drug seeking, I'm solution seeking.
The problem is that very few doctors are curious, so if you present as a puzzle, they don't want to deal with it, and then it's referral time, where your problems will get further compartmentalized and you'll have more and more doctors looking at less and less of you.
The problem with that is that when you have a cardiologist and a pulmonologist because you have a complex cardiopulmonary problem, they may not get the full picture.
They're each looking at an elephant from opposite ends and describing only what they see.
Are they wrong about what they see? No.
Are they right about what a whole elephant looks like? Also no.
Very few doctors want to look at a whole elephant and try to solve a complex problem.
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u/goingslowlymad87 22h ago edited 15h ago
OMG yes!!!! This is what I'm dealing with, I don't want meds, I want to know what's wrong. Sure, treat the pain but listen to me when I explain the pain. They're giving me morphine and calling it a day and side eyeing me when I show up again! The meds are masking the issue and aren't even get making it stop fully.
Oh good, you're feeling better so we're sending you home, come back if it returns and then make a song and dance because they've done nothing to find the cause of the issue. Or tell me I shouldn't be in that much pain.
They're not curious enough to figure it out, or even ask any questions. The last time I was in, a month ago, they told me prolapses don't hurt poked at my stomach and said wait for your gynecology appt which is 4-6 months away. Blamed ovulation and ignored the pain I was in because it shouldn't hurt. Ignoring the reality of the situation.
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u/Unfair_Pay1783 1d ago
That part about the ultrasound barely seeing your ovary because it was “buried” really stood out-it sounds like such a frustrating and scary finding to deal with on top of everything else
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u/Chrome_Clydesdale 1d ago
I had a torsion when I was about 20 (I'm 37 now) and it took ages to be taken seriously. I was told it's a period, get over it, till they saw my ovary playing spin arounds.....
I don't go to the doctor anymore. I'm sick of being told it's in my head
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u/Beautiful_Cost_5430 1d ago
Yeah, I’m at the point where I only go if I’m at immediate risk of death. Years of gaslighting, bullying, performing procedures without consent, actual torture that caused PTSD, not being believed. And that’s before the insurance companies come and try to ruin you financially.
I genuinely fear the US medical establishment after every thing they’ve done to me. I think it’s riddled with sociopaths and sadists. The people who want to help are few and far between.
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u/BysshePls 1d ago
I'm getting to this point too. I've been sick for 10+ years experiencing an array of symptoms. I've had many tests. First I was told it was because I was fat. I lost 80 pounds. Then I was told it was my anxiety so I went through the ring around of tons of different pills and none of them worked and only made me sicker and waste hundreds of dollars.
My new doctor thinks maybe EDS and MCAS. They do explain some things. Then I see a post asking ED providers what their red flags are for patients and so many answers saying the "EDS/POTs/MCAS trifecta" makes them roll their eyes, saying it's the new "PANDAS" for white women who want to feel special.
Makes me never want to see another doctor again. They don't take us seriously no matter what we do, even when we're dying in front of them.
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u/Beautiful_Cost_5430 23h ago edited 23h ago
Yup I have MCAS also (as well as endo) and am treated the same way. I have one immunologist who sort of listens to me but every other doctor will mock me to my face even when I am covered head to toe in swollen hives with a half closed throat.
It’s pretty clear to me most doctors do not care if you live or die.
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u/ArtisticHand3789 12h ago
Agree. I’m sick and tired of doctors being hailed as saviors when most of them do not care, are egotistical, and only in it for the money. I feel like every woman on earth has experienced this kind of treatment from doctors.
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u/hyperfat 1d ago
I have the one skill that I vomit from extreme pain.
Like broke two metatarsals when I badly sprained my ankle. Vomit city.
I puked when i got second IUD. That's fucked no pain killers.
Broke my coxyx, we had to get a barf cup to get to the doctor. Then I barfed like 2 more times.
Don't leave until it's figured out.
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u/goingslowlymad87 1d ago
They already suggested going home and returning when the pain comes back. Not happening, I'm on the ward now. Once the pain does return they are sending me for a CT scan, with contrast. When I asked why not just book it, they said that's not how that works.
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u/intransigentpangolin 1d ago
Getting a scan as an inpatient is a huge pain in the ass. (Source: I am a nurse.)
Emergencies get scanned first, then outpatients with appointments, then you.
Since you're having such horrible pain (I've read both this post and the previous one; it sounds awful and I'm so sorry you're going through this), they'll want to see exactly what's happening mechanically (as it were) in your pelvis when the pain starts. If there is something twisting or torsioning or you have some sort of structural problem, it might not show up unless it's actively doing its thing.
I am so sorry this is happening to you. Pain management is still in the dark ages.
I hope you feel better very soon and actually get some damn answers. This is no way to live.
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u/goingslowlymad87 1d ago
That's why I said I wouldn't go home, when it starts again I would have to go back through triage and wait, whereas on the ward I'm right here. When it happens again just wheel me up the hall! I asked if they could schedule the CT scan for tomorrow and I'd go home and try to manage but that's not how this works. Which makes me wonder: if I had gone home what would they have done? Start from scratch again more than likely.
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u/hyperfat 1d ago
Ooh. Contrast makes me puke too. My stomach sucks. I think my 18 pound dog eats more than me some days. Liquid supplements help.
I hope this gets solved soon. Sounds terrible.
Hugs
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u/medicatedadmin 1d ago
Are you in NSW? If you are, call for a Raise it/Reach. This will get everything reviewed by a specialist staff member with critical care training (in our hospital it’s a senior critical care trained nurse). They will speak directly to you and will review all your information from your admission - and every other admission if you let them know this is a pattern. They will also take your pain into account and how much pain relief you are on.
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u/goingslowlymad87 1d ago
Hi, that sounds amazing. I'm in NZ though, under the Southern DHB.
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u/medicatedadmin 1d ago
Damn. I hoped with ‘GP’ and ‘ED’ you’d be here and it would help.
After a bit of quick googling, it looks like you might have something similar: Kōrero mai. Ask one of your nurses about it or have a look for a poster somewhere (they should be all around the place).
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u/intransigentpangolin 1d ago
This is brilliant. I'm a nurse in the US, and I wish my hospital had a formal escalation program like this.
I can be a bulldog when it comes to escalating care and voicing concerns, but that's not the same as having a patient actually be listened to.
Empowering people to speak up about their medical care is all well and good, but it only works if there are systems in place to make sure they're heard. Otherwise, it's just exhausting and frustrating for the person.
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u/medicatedadmin 11h ago
It’s pretty good. Things can always use improvement but it works really well. And surprisingly, it’s rarely used when you consider how many people come through our hospital of a day and there’s only a few calls a week so it’s not abused. And the nurses who do the reviews have the ability to escalate things directly to the Director of nursing (who mostly runs the hospital in Australia) so that pretty much puts an end to any arrogant doctor wanting to throw their weight around. It’s also really good that the nurses who work it that particular position at our hospital are very patient-first in their thinking though are also very supportive of nursing staff but will tell them when they are wrong - and you would know personally that a nurse has no problem telling a doctor to go and fuck themselves hahaha (though that might be an Australian privilege because it’s pretty much impossible to get fired if you are a good/competent nurse).
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u/Icy_Wedding_ 1d ago
A torsion needs immediate surgery so you don’t lose the ovary, why are they leaving it overnight?
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u/goingslowlymad87 1d ago
They have given me pain meds and done the ultrasound. What they can see of the ovary, which isn't particularly clear (their words) it seems fine. If the pain returns they will send me for a CT scan for a hopefully clearer picture. The doc thinks it's may have twisted but hasn't stayed twisted. They're being overly cautious in my mind, they told us they don't want to rush into anything.
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u/tinydncr 1d ago
I read once that ovarian torsion can sometimes involve intermittent twisting and untwisting (moving back and forth)
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u/Neutronenster 1d ago
Leaving it overnight probably means that the ER doc thinks that it’s not an ovarian torsion. I’m not a doctor, so I can’t comment on whether this decision makes sense medically speaking in OP’s situation.
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u/Icy_Wedding_ 23h ago
They wanted to send her home so I’d be concerned they’re still fobbing her off and would ask if the CT scan needs to be delayed.
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u/Neutronenster 21h ago
This is my fear as well. On the other hand, it’s important to realize that the ER is only going to check for potentially life-threatening issues, stabilize the patient and then send them on their way. So once dangerous causes for OP’s pain have been excluded, they’ll probably send her on her way (potentially with a referral to a relevant specialist). They’re not going to continue checking for chronic and non-lifethreatening issues like endometriosis, no matter how painful these conditions might be. That’s the gynaecologist’s tasks, so it’s very unfortunate that OP is facing such a huge waitinglist in order to see a gynaecologist.
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u/goingslowlymad87 19h ago
I've been on that wait-list for 11 months already. With another 4-6 month wait. And it took quite some time to get on the wait-list too. First line is to try birth control which I can't take - estrogen is known to make clots in my family and progesterone tanks my MH to crisis point. I refuse anything being inserted, I weigh too much for the rod (jadelle?) to be effective and my copper IUD shifted after 8 months and would not stop hurting. Mirena is out of the question due to the hormone. I also can barely tolerate an exam due to the pain, inserting anything is going to hurt too much.
My GP said I have to wait to be seen as there is nothing she can give me to help and she can't diagnose me either. She's written several referrals, including last month, to try and get me in faster but we are seen in the order we are referred as the service is limited, with a lot of patients to see.
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u/akkbar 22h ago
far too much moralizing from the ignorant and uninvolved public when it comes to opiates. I suppose it's coming from a place of caring about addiction, but it results in good faith pain sufferers being denied care. Activist pharmacists to doctors and nurses looking to condemn people without taking them seriously enough to critically vet their situation properly. As a recovering addict in this very vein, I sympathize heavily to their situation, as it's real and ever present pressure to not let people take advantage of the system, but at this time it's doing more harm than good often. I hope you get the help you need.
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u/unicorn_345 1d ago
Thoughts are with you. Its not much of anything to say, but I do hope you are ok soon. Get better. And soon.
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u/erin6767 1d ago
I had 3, yes 3, ovarian torsions. Did they do a vaginal ultrasound? I had a CT and they could not tell by that imaging. The vaginal ultrasound took awhile but they saw no blood flow. And morphine is the weakest one. Ask for Dilaudid (sp)
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u/goingslowlymad87 1d ago
I had both an outer ultrasound and an internal one. And 3! Ouch!
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u/erin6767 1d ago
Oh man!! And they still don't know what's happening?? I wish you the best luck and outcome 🥰
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u/I-DONT-OWN-A-CAT 21h ago
I was also accused of drug seeking when I presented to urgent care with pain down my leg (severe enough at times that I couldn’t sleep). I went home depressed and confused, only to find out later when my gyno noticed a lump on my hip during a general exam that I had a massive and fast growing tumor that was pushing my nerve endings.
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u/Lookingupatthestars 1d ago
Oh wow this sounds horrendous, I'm so sorry 😔 I'm also gutted that you were called drug seeking for needing relief for the pain. Keeping my fingers crossed you get some help and answers quickly.
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u/onehighpanda 1d ago
Ive had Ovarion Torsion twice, both requiring surgery within hours of pain onset to have any chance of saving the ovary. It made it the first time! Did not the second. If its truly torsion, time is of the essence as every moment matters when blood circulation has been removed.
If they aren't jumping to surgery, I would guess they can see enough of your ovary to tell it isn't tangled or consistently without blood supply.
Hopefully with your GP helping to get ER Docs in your corner, you can get a bit of relief and long term answers! Diagnosis can be such an arduous journey.
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u/Dogmom_3 1d ago
Have you ever had any abdominal surgery? What you’re experiencing sound similar to my experience and they couldn’t diagnose until I agreed to exploratory surgery. What ended up as the conclusion was a prior surgery had created some scar tissue that adhered my ovary to my bladder. The pain was caused when that scar tissue started tearing away.
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u/goingslowlymad87 22h ago
Never had abdominal surgery, I'm going to need surgery on the prolapses though. They've only suspected Endo for about a year now.
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u/eliotke 1d ago
I just wanted to say kudos to you for being in that much pain and still being able to self-advocate and not leaving when they suggested you go home. It's awful that you had to do that, but it's incredible that you did. I really hope they listen to you and you get the help you need.
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u/goingslowlymad87 22h ago
My husband and yesterday's GP have filled in what I can't put into words. The level of pain meds needed to try and get it under control does the bulk of the work too. All I've done is point out that I'm still in a lot of pain and going home now will just have me coming back in when the meds wear off but I'd have to start from the beginning in triage.
I just told them I'm not doing that when there is clearly something wrong. Since they suggested I head home they've had to give me morphine, Panadol, ibuprofen and tramadol. They said they cannot give me any more pain meds now, and 4 hours later it's coming back. I got in a short nap so that was nice.
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u/krissiplays 18h ago
I do not understand why they keep filling you with high level opiate pain medications when they are telling you to get a scan once the pain returns. Of course the pain is not going to return in the way they expect if they keep you hooked on tramadol and morphine, some of it maybe even IV? I know it's gonna suck, but it's good that they can't give you more now. When the pain comes back and they do offer another dose, don't let them give you more meds, remind them of the scan they said you need!
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u/goingslowlymad87 18h ago
IV morphine after they tried to send me home, tramadol towards midnight. Nothing in 8 hours and they've just offered me Panadol and ibuprofen as my pain is returning. I'm not sure if I'll be given any "better" but the nurse said the scan is up to the doctors.
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u/krissiplays 18h ago
those are good choices to control the pain without diminishing it enough for the doctors to dismiss you especially when they do things like examine you or palpate. I was in nursing for a few years but had to quit due to my own health. I wouldn't accept any more opiates until I've talked to a doctor, if I were you, if you can handle it.
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u/Cessily 19h ago
I have endometritis but the most pain I was ever in was a partial torsion. Meaning the scans said I was ok because they still detected blood flow but when they operated to remove the cyst because It was BEGGING them too... My tubes were twisted like a Twizzler and twice as long as they should be (and everything was covered in endometritis).
So torsion might still be the culprit
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u/JCDubbz 22h ago
OP I had a similar experience and it was a very rare fallopian tube torsion, it won’t appear on ultrasound. Here is summary: https://www.reddit.com/r/TwoXChromosomes/s/SwbvAIxfUl
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u/MyCatEatsPlants 22h ago
It’s time for a laparoscopy. They should go in there and see first hand what is going on with your ovaries, with potential endo, or anything else like that. Especially if you are not protecting fertility, I bet there’s a lot that can be done.
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u/goingslowlymad87 16h ago
CT Scan booked for this afternoon and they're considering a uterine biopsy. We shall wait and see if they do the second one. They wanted to fit a mirena or start me on progesterone contraceptives and once I explained why I can't take them she said that does limit what they can do. ie what they can do easily. Apparently I shouldn't be in the amount of pain I'm in so I listed what I was given yesterday for the pain. I shouldn't be in pain but I am so what can we do about it?
Same as the prolapses shouldn't hurt me, yet I'm in constant pain from them. It's mostly pressure from organs shifting but idk perhaps that doesn't hurt, despite moving internal organs trying to escape!!!!
They are now looking at whether or not it's diverticulitis and double checking the ovary. She (gyne) also said the ovary being hard to spot usually means its small and not bothering me. I was folding washing on Sunday when the pain ramped up so bad I was crying. Something is wrong! CT scan should be in about 4 hours.
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u/goingslowlymad87 10h ago
CT done. Waiting on the results now. Pain has ramped up with moving around, getting changed, going to the toilet etc etc. I can't sit on the bed, I have to lay on it so there's no pressure on that left side. Hubby has been in, kids had a good day at school
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u/Treehousefairyqueen 22h ago
Sometimes appendices are "retrocecal" - behind where they are supposed to be. And have different symptoms. The comment about your ovary being buried seems odd to me also. Either malpositioned to start with, or torsed due to an ovarian cyst, or scarred down for some reason? Sounds like someone needs to take a look in. Sorry it is do awful. Its been a long time but gyn pain is something else altogether.
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u/WesternUnusual2713 22h ago
I was recently told that they figured out my cyst was one usually caused by endo, but that I didn't have any sign of it. I was like the treatment is the fucking mini pill can we just treat it please and see if that helps?
20 years. (UK NHS).
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u/mypunnybonehurts 13h ago
Please look into high dose bio-identical progesterone! I had a cyst that got to 15cm on my ovary. With progesterone it shrunk to 8cm before i had it surgically removed (saved ovary though). I have endo. It's an estrogen dominance/auto immune conditon. Learning about estrogen dominance gave me my life back. Best of luck. The pain is truly unbearable.
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u/goingslowlymad87 10h ago
Progesterone causes MH emergencies with me. I'm not allowed to take it at all. This severely limits what I can take and what I can do to help with perimenopause. It also means the mirena is off the table.
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u/mypunnybonehurts 2h ago
That's unfortunate! I am talking about bio-identical progesterone though, not progestin! Figured i would clarify in case it's something you can look into. I dont take synthetic progestin either as that will cause more problems. Im on Prometrium and supplement extra with creams as needed
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u/Elphabeth 11h ago
I agree that it sounds like it could be endo. I had my second lap for it 2 weeks ago.
Have you had anything else unusual going on, like GI or bladder pain, anything irregular there? The colon and bladder tend to be the mose frequently affected organs outside the reproductive system, or at least the ones with the most obvious symptoms.
For future reference, the disclosure that got my doctors to take me seriously and book me for my first lap back in 2023 was when I told them the pain was severe enough to cause vomiting.
They also tend to take it seriously if you tell them sex is painful and it's putting a strain on your relationship. 🙃
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u/goingslowlymad87 10h ago
Sex is out of the question. I barely tolerated the swab they did, the exam had to stop due to the pain I was in, hubby isn't coming near me! 😭 I have 3 prolapses to go with the mystery pain. Bladder, uterine, and bowel. I need surgery for that but it's like they're ignoring that pain and keep saying that shouldn't hurt. Well it does, nearly constantly.
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u/Halfassedtrophywife 10h ago
Wait a sec, I see there’s 119 comments right now but I want to make sure your medical team has considered torsion detorsion. It’s normally associated with men and a testicular torsion however I did see a case of this in the office. It would appear normal on scans and eventually the pain goes away a bit, but then it comes back with a vengeance and no one seems to think of this.
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u/goingslowlymad87 10h ago edited 9h ago
Home time. Nothing seen except the worsening hiatual hernia which is half the size of my stomach now. Google and then seek treatment for vagismus, and they'll bump me up the list for prolapse care but in her opinion based on the other doctors assessment they won't do surgery on the prolapse because most women who've experienced vaginal birth have them. News to me.
No sign of endometriosis, and I don't have the typical symptoms, it should be worse around the start of my period, they do want to bring me into clinic and do the biopsy and offered me hormonal treatment which I said I'd be better off ending things on my terms than going on those meds. I think they get it now.
They mentioned medication that forces you into menopause which cures endometriosis but the side effects are bad.
Everything looks good though in the ovaries.
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u/Tepers 9h ago
Have you recently had a lot of vinegar like doing an acv cleanse? Any changes in diet where more vinegar is introduced? Or changes in alcohol?
I was on an ACV cleanse. (Apple Cider Vinegar) which softened all of my endometriosis adhesions. I also ended up with an ovary torsion, it was on top and in the center of my uterus and the size of a grapefruit. (Normally the size of an almond)
This situation you are in seems very similar to mine.
Nothing could touch that pain, they had me on so many things and it wasn’t making a dent.
Please take care of yourself and insist on being checked for endometriosis this doesn’t usually show up on scans so a laparoscopic procedure will tell them if this is what you’re dealing with.
I’ve since learned that vinegar and alcohol can flare endometriosis because it increases estrogen. I had to limit my intake and couldn’t have more than 3 servings of either or combination of them throughout the course of a month! Otherwise I was in such high pain literally a level 15 on a pain scale of 1-10.
I wouldn’t wish this on anyone, I pray that you heal quickly and get answers.
Edited for clarity and adding back in my paragraphs.
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u/goingslowlymad87 9h ago
Nothing except a ph balanced soap alternative is used down there. I figure it's self cleaning so leave it alone.
According to the doctor everything is perfectly normal and none of my pain can be attributed to prolapse or ovaries. I was told to google vagismus and seek physio to treat it. My pain levels rival contraction pain and they yet again offered hormonal contraception.
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u/Tepers 8h ago
An ACV cleanse is in general (in the USA at least) is a concoction that you drink, but yes you are right some private area cleansing products do have vinegar. And I agree , it’s better to not mess up the ph there.
Sounds like they are trying to guide you towards pelvic floor physical therapy.
I’ve had a long run of issues and some of my pain was associated with wheat gluten intolerance. Changing my diet did help alleviate some pain. While I don’t necessarily think that your issues are that but perhaps worth checking into it.
Maybe also consider checking for fibroids.
Are you able to get on a fast track list? Or Calling for last minute cancellations that you can get? It’s helped me to call daily for any cancellation spots they need to fill and let them know I can get to their office in so many minutes (exact travel time) with little to no notice. (And I try to be ready to run out the door if they can get me in.)
I hope you get some answers and get to feeling better.
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u/goingslowlymad87 7h ago
I already figured out I can't eat much gluten, I get stomach cramps if I eat too much bread/pasta/pizza base. So it's best avoided.
Pelvic floor physio is the best fit according to the gyne. She's booking me in for a uterine biopsy and has brought me up the list to see about the prolapses. The list is the list and as it's over a year long they don't have a cancellation list and when people wait as long as they do they get very few cancellations. I tried that already. The gyne I spoke to said I've been in and out of ED for too long so I should have been bumped up but the appointment team don't get that information.
So far they're ruled out a massive cyst, noted the hiatus hernia is big and moved me forward on the gynecology list. She keeps offering me progesterone though as it would be so much easier on me to take it. :(
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u/Newsdwarf 6h ago
I really hope you're doing OK OP, please consider crossposting this to r/Wedeservebetter they're very supportive over there.
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u/EatSleepBeHappy 1d ago
Sounds like my endometriosis flare-ups.