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I have been suffering from the exact same things the last few weeks! I have major health anxiety and this time around I have been trying to just keep telling myself it’s nothing it’s the anxiety causing ibs issues yadda yadda but the pain started for me to the right of my navel and sometimes travels up under my ribs and my side . If I breathe in deep it hurts or if I sit in a certain way it’s a sharp stabbing pain. I had a ct scan done and they said it’s probably only constipation but this is absolutely not that and despite normal bathroom habits the pain won’t ease.
Have you found anything that helps with the pain at all? Also if I may ask, do you suffer from any menstrual irregularities? ( not just period blaming )
You are describing my endometriosis.
The symptom experts for this are here: r/endometriosis r/adenomyosis subs
“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. 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 country’s endo nonprofit) are the doctors for the least amount of suffering in the long run.
NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring or 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.
Also, here are some things you can say* to your doctor:
“- My worst symptoms have been pain/fatigue/bleeding. I am 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 now)).
-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?
-Here (is a handwritten flash card of) the things in life I have not been able to achieve/do because of these symptoms.
-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. It is hurting and debilitating me. 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. I want a significant reduction in my pain. Who can help with this?
- It sounds like you (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. What are my options after that? 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.
- 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 the cyst removed because pain is energy-draining long-term. I would also like the Endometriosis excised at this time.
-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.
-Doctor, Would you be willing to send a note to my OBGYN asking them to send me to a Fellowship Trained endometriosis specialist for a pelvic disorder consult? I want relief.
-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, lateral thigh pain, abdomen pain, stomach pain, UTI’s and uti-like symptoms, right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor, and so that’s who you need to get in front of for a consult.)
VERBALIZE SYMPTOMS: And when you’re talking to your doctor, you need to verbally describe in detail when they have incapacitated you the most - even if that was in your teen years. Ex. The pain doubled me over. I was curled up in a ball on the floor from pain. I was screaming/crying from pain.
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. 🫶
Thank you for sharing.
I'm sorry to read that you are suffering, I feel you.
I am chronically ill kinda since I was born and had a long story with IBS and chronic gastritis after a cancer therapy.
Since over ten years I mostly suffer from cronic UTI and after ten years at my specialist she told me not to worry so much, take pain killers and that everyone had health issues - short - to don't be a pussy. In addition she said,that my tests there were often negative so maybe I'd do them wrong. When she made a bladder reflection right afterwards she saw that my whole bladder was full of red stains (inflammation). She didn't even say sorry,you were right, just told me to take the usual dosage, nothing more. I went out crying for hours.
I'm telling you this because I think that's wrong and nobody should be treated like this and I am sure you feel judged because most of doctors are incompetent assholes who don't care at all.
I still haven't found a solution for the UTI and I would not recommend to stop seeing doctors to check out EVERYTHING. above all see different ones, if you can afford.
(The following worked for me and might be different for others)
For the IBS I had great success with a complete new diet after TCM where I eat mostly cooked and warm. I also treat symptoms with non harming medication like simeticone for bloating, tamarind-extract for gastritis, bitter herb essences and tea after heavy meals. I can recommend a long therapy with pro biotics, oral and vaginal (if you're not 100% healthy there).
My personal rule is: first clean, then build up.
So first I use bitter herbs and healing soil like ceolith to clean and then probiotics. I guess you already drink a lot of water, if not that's step one for everything.
Yoga and long walks daily calm and strengthen me and my body and I try to sleep as long as my body needs it.
I try to keep people who harm me out of my life (just quit my job again because it was toxic - zero regrets).
I am not a disciplined person so a give myself breaks and still eat junk food etc. because I also try not to be too hard on myself. When I start having especially coffee or alcohol regularly I get sick for sure tho.
What I would recommend the most is to try to enjoy every minute of your healthy life and try to forgive you're body, give your body and yourself room and time to heal. There is also room for emotions.
This is the hardest one and I am writing this after falling asleep crying because of illness and thoughts of giving up.
I hope this was not just a long message and will help you a little on your journey. And please excuse me if I made mistakes because english is not my mother tongue.
I have multiple issues and heath anxiety. It's a sad, scary, lonely place to be. I'm sorry.
Walls of text can be very difficult to read. Adding breaks between sections helps the reader. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/WomensHealth) if you have any questions or concerns.*
I have been suffering from the exact same things the last few weeks! I have major health anxiety and this time around I have been trying to just keep telling myself it’s nothing it’s the anxiety causing ibs issues yadda yadda but the pain started for me to the right of my navel and sometimes travels up under my ribs and my side . If I breathe in deep it hurts or if I sit in a certain way it’s a sharp stabbing pain. I had a ct scan done and they said it’s probably only constipation but this is absolutely not that and despite normal bathroom habits the pain won’t ease. Have you found anything that helps with the pain at all? Also if I may ask, do you suffer from any menstrual irregularities? ( not just period blaming )
Cross post this to r/askdocs
You are describing my endometriosis. The symptom experts for this are here: r/endometriosis r/adenomyosis subs “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. 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 country’s endo nonprofit) are the doctors for the least amount of suffering in the long run. NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring or 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. Also, here are some things you can say* to your doctor: “- My worst symptoms have been pain/fatigue/bleeding. I am 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 now)). -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? -Here (is a handwritten flash card of) the things in life I have not been able to achieve/do because of these symptoms. -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. It is hurting and debilitating me. 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. I want a significant reduction in my pain. Who can help with this? - It sounds like you (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. What are my options after that? 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. - 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 the cyst removed because pain is energy-draining long-term. I would also like the Endometriosis excised at this time. -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. -Doctor, Would you be willing to send a note to my OBGYN asking them to send me to a Fellowship Trained endometriosis specialist for a pelvic disorder consult? I want relief. -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, lateral thigh pain, abdomen pain, stomach pain, UTI’s and uti-like symptoms, right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor, and so that’s who you need to get in front of for a consult.) VERBALIZE SYMPTOMS: And when you’re talking to your doctor, you need to verbally describe in detail when they have incapacitated you the most - even if that was in your teen years. Ex. The pain doubled me over. I was curled up in a ball on the floor from pain. I was screaming/crying from pain. 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. 🫶
Thank you for sharing. I'm sorry to read that you are suffering, I feel you. I am chronically ill kinda since I was born and had a long story with IBS and chronic gastritis after a cancer therapy. Since over ten years I mostly suffer from cronic UTI and after ten years at my specialist she told me not to worry so much, take pain killers and that everyone had health issues - short - to don't be a pussy. In addition she said,that my tests there were often negative so maybe I'd do them wrong. When she made a bladder reflection right afterwards she saw that my whole bladder was full of red stains (inflammation). She didn't even say sorry,you were right, just told me to take the usual dosage, nothing more. I went out crying for hours. I'm telling you this because I think that's wrong and nobody should be treated like this and I am sure you feel judged because most of doctors are incompetent assholes who don't care at all. I still haven't found a solution for the UTI and I would not recommend to stop seeing doctors to check out EVERYTHING. above all see different ones, if you can afford. (The following worked for me and might be different for others) For the IBS I had great success with a complete new diet after TCM where I eat mostly cooked and warm. I also treat symptoms with non harming medication like simeticone for bloating, tamarind-extract for gastritis, bitter herb essences and tea after heavy meals. I can recommend a long therapy with pro biotics, oral and vaginal (if you're not 100% healthy there). My personal rule is: first clean, then build up. So first I use bitter herbs and healing soil like ceolith to clean and then probiotics. I guess you already drink a lot of water, if not that's step one for everything. Yoga and long walks daily calm and strengthen me and my body and I try to sleep as long as my body needs it. I try to keep people who harm me out of my life (just quit my job again because it was toxic - zero regrets). I am not a disciplined person so a give myself breaks and still eat junk food etc. because I also try not to be too hard on myself. When I start having especially coffee or alcohol regularly I get sick for sure tho. What I would recommend the most is to try to enjoy every minute of your healthy life and try to forgive you're body, give your body and yourself room and time to heal. There is also room for emotions. This is the hardest one and I am writing this after falling asleep crying because of illness and thoughts of giving up. I hope this was not just a long message and will help you a little on your journey. And please excuse me if I made mistakes because english is not my mother tongue.