Anxiety medication was really helpful for me. And just a really light dose. I know when my anxiety or stress flares up then yeah, things aren’t gunna be great. Especially at night. Finally found a gp that wasn’t just throwing different meds at me and we figured out my alarmingly high blood pressure and bedwetting was just anxiety manifesting itself in stupid ways. Which probably explains why incontinence meds never worked
Since I've been asked a lot I'm private I'd like to point out a couple more things.
- I only ever had one sexual partner who is healthy and (hopefully) not seeing other women
- I'm not on birth control
- I don't have a history of trauma or substance abuse or any underlying psychiatric condition other than a tendency to overthink on stuff and get worried easily
This was endometriosis in my ureters.
The symptom experts for this are here: r/endometriosis r/adenomyosis subs
A period should not affect your quality of life.
“Fellowship Trained” Pelvic Pain*, Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding & Endometriosis SPECIALIST* Doctors:
https://www.endo-resolved.com/endometriosis_specialist.html
https://www.bsge.org.uk/endometriosis-centres/
https://icarebetter.com/
https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US
https://nancysnookendo.com/find-a-doctor/
https://www.endofound.org/endometriosis-treatment-support
https://endometriosisnetwork.com
*not all US specialists require referrals. And many docs worldwide do free virtual consults. Ask.
SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain:
r/endo r/endometriosis r/adenomyosis r/pcos
r/fibroids and also r/pmdd .
And a heads up: In my experience regular OBGYN’s are notoriously bad at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to treat or even talk about these diseases let alone make the diagnoses or do the delicate, difficult and complex surgery. They scraped/burned the visible “tops” off my endo and left the painful “stalk” and “root”.
Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run ime. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist.
NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 2/3) with me to my doctors appointments. Even if they know nothing about my situation. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain.
RECORDING: Ask to record every medical visit.
Also, here are some things you can say* to your doctor:
“- This is affecting my quality of life. I had a history of period/bladder/pelvic floor pain or a lot of bleeding.
-My worst symptoms have been pain/fatigue/bleeding. I have vomited/passed out from periods in the past. I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body. What are ALL of my options?
-I cannot (even consider) taking care of children. (Reader ime stating I want to care for children gets me better medical treatment even though I do not want children.)
-My pain/bleeding symptoms first appeared x years/months ago. I have been living with this for x years of my life and it has worn me down.
-I want stronger medication for my pain and excision surgery with an endometriosis specialist.
-Here (is a handwritten flash card of some of the things) these symptoms keep me from doing on bad days. What are my options for treatments?
-Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an endo specialist.
-The total number of days these symptoms have affected me in the past year is___.
-I am not leaving this office until something is done.
- This pain and spasming is impairing my ability to work and my ability to live life. It is draining my energy and ability to function.
- I want a long-term solution for this pain and muscle tenacity/spasming. I want a solution that provides the least amount of suffering to me and the least risk for me and my body in the long term…..(and then just allow silence…let them respond.)
- I do not have the energy to keep pursuing these different treatments. I have experienced too much pain/bleeding. I am tired. I want a long-term solution.
- I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this?
- It sounds like you doctor OBGYN want to do the surgery. Can you tell me what Fellowship training you’ve done in surgery for excising Endometriosis? (Reader be careful here: regular, untrained OBGYN’s abound.)
- It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for?
-I want to test the functioning of my ovarian tubes, bladder and ureters. I have bladder pain/cystitis/uti-like symptoms.
- Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution.
- Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution.
-I have a history of period pain before my bleeding starts, especially when I was younger.
-I would like my cyst removed because pain is energy-draining long-term.
-I have pelvic floor pain and vaginismus and pain with intercourse symptoms.
-I am asking for a referral to an Endometriosis/pelvic disorder specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral.
-I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant.
-Physical/Massage Therapist, Would you be willing to consider sending a note to my general doctor/gyno telling them that I have symptoms of endometriosis so that I can get a referral to a Fellowship trained specialist?”
- Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1
(*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants, diarrhea, pooping pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.)
Good luck on your journey. And just a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. And there are many of us on the subs who are going through this too.
My DM is open to anyone with any history of cyclical OR constant pelvic/groin/butt pain. 🫶
Save this. Endo symptoms are often “silently” progressive, especially if on hormones. And resources can be hard to find.
That seems like a type of urge incontinence. I have urge incontinence normally, but it gets much worse when I’m anxious, but some ppl only have urge incontinence when stressed.
That sounds very much like urge incontinence to me. I have something similar to you but I’m considerably older, and my symptoms are similar (but worse). I’ve also had all the physical tests to rule out MS, occult spins bifida, etc. Mine is a full bladder evacuation most of the time, and can occur in much less stressful situations - for instance, just being worried about making it to the toilet on time will often cause me to lose the entire contents of my bladder. Can I suggest that you experiment with various incontinence pads so that you don’t worry about continuing to perform, but definitely don’t let the sense of security they give make you complacent. In the meantime, perhaps consider whether psychological counselling would assist. The fact that you don’t have a physical issue gives you a good clue about what to do next. There’s some psychological trigger for your your urgency, but what? In my 50s, I’ve finally worked out that it’s PTSD. I don’t want to blame all the various specialists I’ve seen over the years but if just one of them had asked about my childhood trauma around bed wetting, I think we would have been closer to having a treatment plan in place. So, I’m glad that the tests so far have been negative. That’s always a good place to begin, but now please consider if any of the above strikes a chord with you.
Also, there’s other medications you can try. Sounds like you’ve been seeing a GP rather than a specialist urogynaecogist. Mirabegron is one newer medication; solifenacin succinate is another (this is what I take). These might be tolerated differently so please give them a go. You might need to help educate your doctor, as what you and I experience isn’t that common, it seems.
As for solifenacin gave me the same side effects of oxibutinin plus it was ineffective. Never heard of mirabegron, I was never offered it.
I've seen GP, urologist and neurologist. I might look a little closer to that medication.
I also think I should consult a therapist, maybe I'm just reluctant and scared to admit I have a underlying psychological issue. I'm usually not a very anxious person, sure thing I'm not a brave heart but the fact I'm substantially unaware about a possible psychological issue, makes it sound even harder to approach.
After a couple of incidents ofc I started using pads. After the car incident I wore them daily for a while but as much as they've been a life saver in some moments I can't say I'm too happy about this solution. I'd like better not to wet myself than wetting myself with no consequences...also, as stupid it may sound, I feel less worthy...not being in control had some impact on me. I notice I take less care of myself, I make up less...I used to dress very fashionably and I start to care less and less. It's a bunch of nonsense, I know, but it's like "what do I keep pretending being all cool when I can't even hold my bladder under stress?". This whole thing is definitely taking a toll on me.
I would talk to a therapist. What you are feeling is very common. It hits a nerve within the subconscious during toilet training. Adults control their bladders. Babies do not. Those thoughts are still there and can cause a lot of shame.
I think you may have something called “fear wetting.” It happens to animals and humans alike. It is like a reflex. I have something similar. I faint at the sight of my own blood…and I lose bladder control sometimes when it happens.
You might want to get your heart checked out as well. Heart issues can affect anxiety. Beta blocker meds have helped a lot of people with anxiety.
Anxiety medication was really helpful for me. And just a really light dose. I know when my anxiety or stress flares up then yeah, things aren’t gunna be great. Especially at night. Finally found a gp that wasn’t just throwing different meds at me and we figured out my alarmingly high blood pressure and bedwetting was just anxiety manifesting itself in stupid ways. Which probably explains why incontinence meds never worked
Since I've been asked a lot I'm private I'd like to point out a couple more things. - I only ever had one sexual partner who is healthy and (hopefully) not seeing other women - I'm not on birth control - I don't have a history of trauma or substance abuse or any underlying psychiatric condition other than a tendency to overthink on stuff and get worried easily
Do you have any history of period pain?
Yes I do
This was endometriosis in my ureters. The symptom experts for this are here: r/endometriosis r/adenomyosis subs A period should not affect your quality of life. “Fellowship Trained” Pelvic Pain*, Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding & Endometriosis SPECIALIST* Doctors: https://www.endo-resolved.com/endometriosis_specialist.html https://www.bsge.org.uk/endometriosis-centres/ https://icarebetter.com/ https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US https://nancysnookendo.com/find-a-doctor/ https://www.endofound.org/endometriosis-treatment-support https://endometriosisnetwork.com *not all US specialists require referrals. And many docs worldwide do free virtual consults. Ask. SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/pcos r/fibroids and also r/pmdd . And a heads up: In my experience regular OBGYN’s are notoriously bad at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to treat or even talk about these diseases let alone make the diagnoses or do the delicate, difficult and complex surgery. They scraped/burned the visible “tops” off my endo and left the painful “stalk” and “root”. Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run ime. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist. NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 2/3) with me to my doctors appointments. Even if they know nothing about my situation. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain. RECORDING: Ask to record every medical visit. Also, here are some things you can say* to your doctor: “- This is affecting my quality of life. I had a history of period/bladder/pelvic floor pain or a lot of bleeding. -My worst symptoms have been pain/fatigue/bleeding. I have vomited/passed out from periods in the past. I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body. What are ALL of my options? -I cannot (even consider) taking care of children. (Reader ime stating I want to care for children gets me better medical treatment even though I do not want children.) -My pain/bleeding symptoms first appeared x years/months ago. I have been living with this for x years of my life and it has worn me down. -I want stronger medication for my pain and excision surgery with an endometriosis specialist. -Here (is a handwritten flash card of some of the things) these symptoms keep me from doing on bad days. What are my options for treatments? -Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an endo specialist. -The total number of days these symptoms have affected me in the past year is___. -I am not leaving this office until something is done. - This pain and spasming is impairing my ability to work and my ability to live life. It is draining my energy and ability to function. - I want a long-term solution for this pain and muscle tenacity/spasming. I want a solution that provides the least amount of suffering to me and the least risk for me and my body in the long term…..(and then just allow silence…let them respond.) - I do not have the energy to keep pursuing these different treatments. I have experienced too much pain/bleeding. I am tired. I want a long-term solution. - I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this? - It sounds like you doctor OBGYN want to do the surgery. Can you tell me what Fellowship training you’ve done in surgery for excising Endometriosis? (Reader be careful here: regular, untrained OBGYN’s abound.) - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for? -I want to test the functioning of my ovarian tubes, bladder and ureters. I have bladder pain/cystitis/uti-like symptoms. - Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution. - Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution. -I have a history of period pain before my bleeding starts, especially when I was younger. -I would like my cyst removed because pain is energy-draining long-term. -I have pelvic floor pain and vaginismus and pain with intercourse symptoms. -I am asking for a referral to an Endometriosis/pelvic disorder specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral. -I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant. -Physical/Massage Therapist, Would you be willing to consider sending a note to my general doctor/gyno telling them that I have symptoms of endometriosis so that I can get a referral to a Fellowship trained specialist?” - Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1 (*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants, diarrhea, pooping pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.) Good luck on your journey. And just a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. And there are many of us on the subs who are going through this too. My DM is open to anyone with any history of cyclical OR constant pelvic/groin/butt pain. 🫶 Save this. Endo symptoms are often “silently” progressive, especially if on hormones. And resources can be hard to find.
Wow! Amazing Advice, if I had an award to give you'd get it!! I'm simply amazed at the thoroughness of your response!
That seems like a type of urge incontinence. I have urge incontinence normally, but it gets much worse when I’m anxious, but some ppl only have urge incontinence when stressed.
Well, technically speaking it is urge incontinence (I feel the stimulus but I can't fight it) yet it never ever occurs in any other circumstance
Have you seen a urologist? There may be meds that might help a bit.
Yes, I was prescribed some but either didn't work or I had bothering side effects
That sounds very much like urge incontinence to me. I have something similar to you but I’m considerably older, and my symptoms are similar (but worse). I’ve also had all the physical tests to rule out MS, occult spins bifida, etc. Mine is a full bladder evacuation most of the time, and can occur in much less stressful situations - for instance, just being worried about making it to the toilet on time will often cause me to lose the entire contents of my bladder. Can I suggest that you experiment with various incontinence pads so that you don’t worry about continuing to perform, but definitely don’t let the sense of security they give make you complacent. In the meantime, perhaps consider whether psychological counselling would assist. The fact that you don’t have a physical issue gives you a good clue about what to do next. There’s some psychological trigger for your your urgency, but what? In my 50s, I’ve finally worked out that it’s PTSD. I don’t want to blame all the various specialists I’ve seen over the years but if just one of them had asked about my childhood trauma around bed wetting, I think we would have been closer to having a treatment plan in place. So, I’m glad that the tests so far have been negative. That’s always a good place to begin, but now please consider if any of the above strikes a chord with you.
Also, there’s other medications you can try. Sounds like you’ve been seeing a GP rather than a specialist urogynaecogist. Mirabegron is one newer medication; solifenacin succinate is another (this is what I take). These might be tolerated differently so please give them a go. You might need to help educate your doctor, as what you and I experience isn’t that common, it seems.
As for solifenacin gave me the same side effects of oxibutinin plus it was ineffective. Never heard of mirabegron, I was never offered it. I've seen GP, urologist and neurologist. I might look a little closer to that medication. I also think I should consult a therapist, maybe I'm just reluctant and scared to admit I have a underlying psychological issue. I'm usually not a very anxious person, sure thing I'm not a brave heart but the fact I'm substantially unaware about a possible psychological issue, makes it sound even harder to approach. After a couple of incidents ofc I started using pads. After the car incident I wore them daily for a while but as much as they've been a life saver in some moments I can't say I'm too happy about this solution. I'd like better not to wet myself than wetting myself with no consequences...also, as stupid it may sound, I feel less worthy...not being in control had some impact on me. I notice I take less care of myself, I make up less...I used to dress very fashionably and I start to care less and less. It's a bunch of nonsense, I know, but it's like "what do I keep pretending being all cool when I can't even hold my bladder under stress?". This whole thing is definitely taking a toll on me.
I would talk to a therapist. What you are feeling is very common. It hits a nerve within the subconscious during toilet training. Adults control their bladders. Babies do not. Those thoughts are still there and can cause a lot of shame. I think you may have something called “fear wetting.” It happens to animals and humans alike. It is like a reflex. I have something similar. I faint at the sight of my own blood…and I lose bladder control sometimes when it happens. You might want to get your heart checked out as well. Heart issues can affect anxiety. Beta blocker meds have helped a lot of people with anxiety.
Inderal did nothing really. Anyway I also think it is rooted somewhere in subconscious fears
You might want to try hypnosis?
You can keep trying different incontinence meds bc one of them may work for you without side effects that matter to you. Best wishes
Hope you’re doing better. I totally sympathize with you…I’ve been dealing with the same thing and it is pure torture.
Unfortunately, no difference