IBS/painful bladder syndrome/ adenyomosis / endometriosis ???
hey, i have been diagnosed with PCOS ... i am always being dismissed because of my pelvic ultrasounds being normal. i havent got any intolerances as ive been tested already. am i overthinking and could this just be normal?
my symptoms :
- pelvic pain (occurs outside periods sometimes and can be severe but not always)
- some periods are painful, some are okay (i have irregular periods so hard to tell )
- used to be very very heavy and now extremely light, maybe not ovulating?
- bladder incontinence with tampons in/ bladder pain (uti symptoms but no uti)/ urgency to pee/ blood in urine on period (not always)
- bloating (but i have a lot of belly so its hard to see as im overweight, i do have some upper bloating and as well as some lower belly)
- rectum / vaginal spasms on periods
- bowel issues on period
- lower back pain
- tingly , numb hip, leg only on period (day 1 and day 2 only)ITS SO UNCOMFORTABLE!! was thinking sciatic nerve endo?
but other than that, my pelvic pain hasn't been that bad for a while tbh. but when it gets bad, it is VERY BAD. it's just unpredictable but ig i dont have it as bad as others
so idk if its possibly just normal ???
my symptoms :
- pelvic pain (occurs outside periods sometimes and can be severe but not always)
- some periods are painful, some are okay (i have irregular periods so hard to tell )
- used to be very very heavy and now extremely light, maybe not ovulating?
- bladder incontinence with tampons in/ bladder pain (uti symptoms but no uti)/ urgency to pee/ blood in urine on period (not always)
- bloating (but i have a lot of belly so its hard to see as im overweight, i do have some upper bloating and as well as some lower belly)
- rectum / vaginal spasms on periods
- bowel issues on period
- lower back pain
- tingly , numb hip, leg only on period (day 1 and day 2 only)ITS SO UNCOMFORTABLE!! was thinking sciatic nerve endo?
but other than that, my pelvic pain hasn't been that bad for a while tbh. but when it gets bad, it is VERY BAD. it's just unpredictable but ig i dont have it as bad as others
so idk if its possibly just normal ???
????
Hey, it sounds like you might have Endometriosis/adenomyosis.
Unfortunately there isn't an easy way to diagnose these without surgery in early stages so doctors will fob you off until the pain is unbearable and you need stronger medicine than over counter pain killers. So it's really important for you to have a good Doctor that will listen/want to help you in the first place.
I got lucky because my Doc has adenomyosis, she goes above and beyond to keep me comfortable.
They will also prescribe the pill for you and in some early cases it can reverse the damage.
If you have sciatic nerve endo it means you've had endo for a while and it's gathered around your sciatic nerve.
Tbh it doesn't matter if you don't have it as bad as others. Endo gets worse with time if you leave it untreated. We all end up in a similar place.
Same with if it's ok some months and not ok other months, it will probably just get worse until every period is a bad period.
I have PCOS, endo and adenomyosis with mobility issues. Been diagnosed without surgery because I was in and out of a&e almost everyday for a month a couple years ago for insane pelvic pain.
Also sciatic endo, I have mobility issues and am seriously considering a walking stick for help.
Good luck
Unfortunately there isn't an easy way to diagnose these without surgery in early stages so doctors will fob you off until the pain is unbearable and you need stronger medicine than over counter pain killers. So it's really important for you to have a good Doctor that will listen/want to help you in the first place.
I got lucky because my Doc has adenomyosis, she goes above and beyond to keep me comfortable.
They will also prescribe the pill for you and in some early cases it can reverse the damage.
If you have sciatic nerve endo it means you've had endo for a while and it's gathered around your sciatic nerve.
Tbh it doesn't matter if you don't have it as bad as others. Endo gets worse with time if you leave it untreated. We all end up in a similar place.
Same with if it's ok some months and not ok other months, it will probably just get worse until every period is a bad period.
I have PCOS, endo and adenomyosis with mobility issues. Been diagnosed without surgery because I was in and out of a&e almost everyday for a month a couple years ago for insane pelvic pain.
Also sciatic endo, I have mobility issues and am seriously considering a walking stick for help.
Good luck
Original post by Anonymous
Hey, it sounds like you might have Endometriosis/adenomyosis.
Unfortunately there isn't an easy way to diagnose these without surgery in early stages so doctors will fob you off until the pain is unbearable and you need stronger medicine than over counter pain killers. So it's really important for you to have a good Doctor that will listen/want to help you in the first place.
I got lucky because my Doc has adenomyosis, she goes above and beyond to keep me comfortable.
They will also prescribe the pill for you and in some early cases it can reverse the damage.
If you have sciatic nerve endo it means you've had endo for a while and it's gathered around your sciatic nerve.
Tbh it doesn't matter if you don't have it as bad as others. Endo gets worse with time if you leave it untreated. We all end up in a similar place.
Same with if it's ok some months and not ok other months, it will probably just get worse until every period is a bad period.
I have PCOS, endo and adenomyosis with mobility issues. Been diagnosed without surgery because I was in and out of a&e almost everyday for a month a couple years ago for insane pelvic pain.
Also sciatic endo, I have mobility issues and am seriously considering a walking stick for help.
Good luck
Unfortunately there isn't an easy way to diagnose these without surgery in early stages so doctors will fob you off until the pain is unbearable and you need stronger medicine than over counter pain killers. So it's really important for you to have a good Doctor that will listen/want to help you in the first place.
I got lucky because my Doc has adenomyosis, she goes above and beyond to keep me comfortable.
They will also prescribe the pill for you and in some early cases it can reverse the damage.
If you have sciatic nerve endo it means you've had endo for a while and it's gathered around your sciatic nerve.
Tbh it doesn't matter if you don't have it as bad as others. Endo gets worse with time if you leave it untreated. We all end up in a similar place.
Same with if it's ok some months and not ok other months, it will probably just get worse until every period is a bad period.
I have PCOS, endo and adenomyosis with mobility issues. Been diagnosed without surgery because I was in and out of a&e almost everyday for a month a couple years ago for insane pelvic pain.
Also sciatic endo, I have mobility issues and am seriously considering a walking stick for help.
Good luck
hi thanks for getting back to me,
i remember missing periods at school and being on the floor in agony with no paracetamol or ibuprofen to fix it. i was told at 10 i had anxiety from the pain & vomiting. i started my period at 11 so idk if that has any correlation?? i don’t think anxiety can cause so much pain. i do have anxiety but i don’t believe it would have caused that much pain.
i remember being in pain in between tnem and sometimes on my periods. i dont think my pain is very cyclical (pelvic pain). i only experienced the leg problem when i was 15 and im 19 next week. so im assuming, it has spread to the nerve but it isn’t sharp pain. it’s just VERY tingly and numb and very uncomfortable. it’s the only symptom that tells me that my period is coming.
but because i have really bad anxiety and possible autism, im very bad at communicating. i just like dealing with the issues by myself idk why. i think it’s because i didn’t know what endo or adeno was when i was younger and experiencing pain and always believed it was just anxiety. i should just write my symptoms on paper maybe.
i was given a combined pill in Feb this year and had it until May and gained so much weight, had migraines and my body image was declining and stopped it because ive had an eating disorder in the past from being overweight and i just didn’t want that to happen. so, my GP gave me a mini pill (progesterone only pill) and i was gaining weight again so ive stopped it and haven’t told my GP.
i think i need to get a new GP because she keeps saying about how my ultrasound was normal and dismisses me. i always wonder if i have IBS or even infections. it makes me think that i dont have endo or adeno. just wish it was easy to get a good dr that knows about these conditions and have surgery
im so sorry you deal with all those three ❤️ hope your symptoms have been kind to you.
thank you for your help
.Anxiety and stress are the worst contributing factors to the pain. Also food with lots of sugar/chocolate.
Endo and adeno also cause pain when you're not on your period so yes it sounds like your case has developed quite a bit. And no, endo will not show up on an ultrasound or transvaginal scan, the only way they can tell is if you have adenomyosis by measuring the shape of your uterus from the scan.
Definitely start writing your symptoms down, how they made you feel as well. If your current Dr is not listening to you, get a new Dr. And if they don't listen to you either, get a new Dr. It helped me a lot when I only asked to speak with female Dr.s. You need to drive the point home that you are having mobility issues and pain that stops you from living a normal life and doing everyday activities.
I downplayed my symptoms (I think it was my tone of voice) and I wasn't getting the help I needed.
I think also because you're young they always try to say something about hormones and sometimes you will just hurt like that on your period.
Yeah, the pill really sucks. I had horrible MH for a year and I only took it for 3 months before I couldn't handle it anymore. I think you should tell a Dr. so they can at least give you some effective pain relief. There are a few medications they can try you on before cocodamol.
It's seriously rubbish to have chronic pain like this but I really think it's starting to get more recognition now because we're becoming more vocal about our limitations so I believe you will be able to find the help you deserve.
Idk if any of this will help, I just know how you feel. I know it sucks and its lonely, confusing and frustrating. Just don't stop fighting for yourself because someone will eventually listen!!!
Endo and adeno also cause pain when you're not on your period so yes it sounds like your case has developed quite a bit. And no, endo will not show up on an ultrasound or transvaginal scan, the only way they can tell is if you have adenomyosis by measuring the shape of your uterus from the scan.
Definitely start writing your symptoms down, how they made you feel as well. If your current Dr is not listening to you, get a new Dr. And if they don't listen to you either, get a new Dr. It helped me a lot when I only asked to speak with female Dr.s. You need to drive the point home that you are having mobility issues and pain that stops you from living a normal life and doing everyday activities.
I downplayed my symptoms (I think it was my tone of voice) and I wasn't getting the help I needed.
I think also because you're young they always try to say something about hormones and sometimes you will just hurt like that on your period.
Yeah, the pill really sucks. I had horrible MH for a year and I only took it for 3 months before I couldn't handle it anymore. I think you should tell a Dr. so they can at least give you some effective pain relief. There are a few medications they can try you on before cocodamol.
It's seriously rubbish to have chronic pain like this but I really think it's starting to get more recognition now because we're becoming more vocal about our limitations so I believe you will be able to find the help you deserve.
Idk if any of this will help, I just know how you feel. I know it sucks and its lonely, confusing and frustrating. Just don't stop fighting for yourself because someone will eventually listen!!!
Original post by Anonymous
Anxiety and stress are the worst contributing factors to the pain. Also food with lots of sugar/chocolate.
Endo and adeno also cause pain when you're not on your period so yes it sounds like your case has developed quite a bit. And no, endo will not show up on an ultrasound or transvaginal scan, the only way they can tell is if you have adenomyosis by measuring the shape of your uterus from the scan.
Definitely start writing your symptoms down, how they made you feel as well. If your current Dr is not listening to you, get a new Dr. And if they don't listen to you either, get a new Dr. It helped me a lot when I only asked to speak with female Dr.s. You need to drive the point home that you are having mobility issues and pain that stops you from living a normal life and doing everyday activities.
I downplayed my symptoms (I think it was my tone of voice) and I wasn't getting the help I needed.
I think also because you're young they always try to say something about hormones and sometimes you will just hurt like that on your period.
Yeah, the pill really sucks. I had horrible MH for a year and I only took it for 3 months before I couldn't handle it anymore. I think you should tell a Dr. so they can at least give you some effective pain relief. There are a few medications they can try you on before cocodamol.
It's seriously rubbish to have chronic pain like this but I really think it's starting to get more recognition now because we're becoming more vocal about our limitations so I believe you will be able to find the help you deserve.
Idk if any of this will help, I just know how you feel. I know it sucks and its lonely, confusing and frustrating. Just don't stop fighting for yourself because someone will eventually listen!!!
Endo and adeno also cause pain when you're not on your period so yes it sounds like your case has developed quite a bit. And no, endo will not show up on an ultrasound or transvaginal scan, the only way they can tell is if you have adenomyosis by measuring the shape of your uterus from the scan.
Definitely start writing your symptoms down, how they made you feel as well. If your current Dr is not listening to you, get a new Dr. And if they don't listen to you either, get a new Dr. It helped me a lot when I only asked to speak with female Dr.s. You need to drive the point home that you are having mobility issues and pain that stops you from living a normal life and doing everyday activities.
I downplayed my symptoms (I think it was my tone of voice) and I wasn't getting the help I needed.
I think also because you're young they always try to say something about hormones and sometimes you will just hurt like that on your period.
Yeah, the pill really sucks. I had horrible MH for a year and I only took it for 3 months before I couldn't handle it anymore. I think you should tell a Dr. so they can at least give you some effective pain relief. There are a few medications they can try you on before cocodamol.
It's seriously rubbish to have chronic pain like this but I really think it's starting to get more recognition now because we're becoming more vocal about our limitations so I believe you will be able to find the help you deserve.
Idk if any of this will help, I just know how you feel. I know it sucks and its lonely, confusing and frustrating. Just don't stop fighting for yourself because someone will eventually listen!!!
anxiety & stress are the worst factors i agree
. ah, so from a normal ultrasound i defo dont have adeno? that’s good then. hopefully i don’t but i hope i can find answers. the other night, i had a dream/nightmare 😭 that i was in surgery and got diagnosed with minimal endo and adeno. so that’s why adeno has crossed my mind as i never really thought about it. im more so leaning towards endometriosis as i have more symptoms of endo. i find that some meats too also worsen the pain.
yes, annoyingly my drs surgery is down my road and very convenient but most dont understand me. so i do need to change drs surgery possibly too
i hope its getting more recognition because theres lots of people suffering with symptoms and keep getting dismissed or ignored which is so upsetting. i really do hope drs will begin to be more supportive and also offer laps for diagnosis if scans aren’t showing instead of giving birth control for example as the only option because the scan wont show.
its a shame!
but yes, it is getting better and theres more awareness now which is great
you have really helped me !! i now dont feel alone and i know that the pain is not normal now. thank youuu soo much
You might have early stages of adeno that can't be detected yet but it's more likely endometriosis, just from the numb pain you get from lower back to legs. So yeah you're correct.
Same with red meat as well, also avoid coffee and bread. I had to clear up my diet a lot I didn't think it contributed to the pain so much but it's another big factor along with stress.
There should be 3 surgeries walking distance from you it's kind of a requirement. So please either ask to speak with a different doctor at ur current surgery or change all together.
Honestly, I hope it happens like that too but I think there are very few endo experts that can do the surgery and on top of that they are in undated.
My cousin got a lap very quickly and she lives in Kent, I've been waiting years for one, I live in London.
You're definitely not alone! Were everywhere and we love helping eachother out good luck with everything xxx
Same with red meat as well, also avoid coffee and bread. I had to clear up my diet a lot I didn't think it contributed to the pain so much but it's another big factor along with stress.
There should be 3 surgeries walking distance from you
it's kind of a requirement. So please either ask to speak with a different doctor at ur current surgery or change all together.Honestly, I hope it happens like that too but I think there are very few endo experts that can do the surgery and on top of that they are in undated.
My cousin got a lap very quickly and she lives in Kent, I've been waiting years for one, I live in London.
You're definitely not alone! Were everywhere and we love helping eachother out
good luck with everything xxxQuick Reply
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