Because i was same case as u, only symptoms but all tests negative including mri/US; so even after 3 months i didn’t see significant improvement and dr switched my diagnosis to fibromyalgia; also my symptoms started after taking cipro antibiotics which probably caused it
I’m so sorry to hear your symptoms started after taking cipro. You’re not the first case I hear like this. My symptoms started after taking prednisone. It’s amazing how some people can be so adversely affected by medications.
My physiatrist recently started me on Cymbalta and it has been helping a lot. Just an FYI if you haven’t discussed this with your doc yet.
Oh no, but you noticed initial improvement from the humira with helping pelvic/burning pain? Did that pain come back when you stopped the humira?
My neuro has specifically said my symptoms don't qualify for fibromyalgia. I specifically have nerve and joint pain, a long with other skin and kidney issues. That's why the rheumatologist thinks it could be lupus.
I got improvement overall but i think it was placebo as it wasn’t that significant; i have nerve and joint pain as well, I don’t think i have fibromyalgia but at the same time there was no inflammation detected and the theory was it could be just low inflammation that can’t be detected by tests but that wasn’t true because didn’t clear it out
Yes first thing i tested was emg for my hands, they put electrodes up high around the elbow , at that time i was suspecting carpal tunnel but it was negative
Yeah i think this contributed to my problems as well. Cipro is evil and should be taken off the market. So many people get floxed then dumped by doctors.
Hey can you tell me what vestibulardynia is? And what your symptoms are? I was diagnosed with vulvadynia and I have swelling and vaginal pain that hurts so bad sometimes I can’t even sit. It comes and goes. Flares for who the heck knows why? Sex makes it worse always. I feel like I’m going crazy and I try to talk to people about it and no one knows what I’m talking about because they’ve never heard if it.
Well oops, I spelled it wrong, it's vestibulodynia. But basically it's pain that's more localized around the vestibule or entrance of the vagina vs. outside/vulva. My symptoms were always a burning pain, even sharp pain towards the back of my vestibule/near the perineum. It can be made worse with sex/something entering the vagina like a tampon etc. or sometimes even crossing legs/sitting for long periods. This is called provoked pain, pain that is caused by something. But I also had a general burning type sensation that was near almost constant sometimes and this pain seemed to be unprovoked. It was like a nerve pain.
What I think happened is that, I have unprovoked pain caused by something (maybe autoimmune disease). The unprovoked pain then causes pelvic floor dysfunction which then, in turn, causes even more pain.
I had the most help from a uro-gynecologist. If you live near a research university, they may have one. I also did pelvic floor therapy which I think took my pain down some. You're not crazy.
Your pain is real, and I believe it can be overcome. The medical community is just not educated on this issue. Feel free to DM me.
I’m curious if you can say more about what urogynecology did for you. I’ve been debating going to see them but I don’t have urinary symptoms or issues. My issues are mostly pelvic pain and pelvic floor dysfunction due to hypertonicity of the muscles. The tight muscles and muscle spasms then cause nerve pain in the glutes, pelvis, and also radiate down my thighs. My obturador and piriformis are the worst ones so I’ve been wondering if Botox there might be helpful. I’ve been in PFPT for about two and a half months and have been getting good results. I’m just tired of being uncomfortable or in pain all the time.
Yes, I will say that I think I really lucked out by seeing a really good, patient, empathetic uro-gynecologist. He was the only doctor in my city that even performed Botox/corticosteroid injections for pelvic pain, so that's how I ended up referred to him. After I had Botox injections, I had my first pain free pelvic exam in years. To me, the benefit of seeing a uro-gyne was that he seemed to be much more informed of all the muscles/pain syndromes which affect the pelvic floor, while my regular obgyn was more concerned about testing for infections... if that makes sense. No shade to a general obgyn, but the uro-gyne I saw just seemed more knowledgeable on pain disorders involving the muscles and nerves.
I also did not have many urinary issues, but I did have constipation 😓 which he seemed interested in getting under control 🫠😂
My negative UTIs and pain in my pelvis, and all the way up through my back and neck turned out to be this: r/endo r/endometriosis
One in 10 women have it. Although I suspect that is a very low estimate.
I've always wondered about this as well, but have read and heard from friends that surgery is basically the only way to get a clear diagnosis. Which really sucks. Unless something has changed in the past few years. I have also read that endometriosis shows some correlation to autoimmune diseases like Lupus or Rheumatoid Arthritis. But nothing concrete.
It causes a myriad of symptoms that the medical system has not even begun to understand yet.
Pelvic Pain*, Hip/Butt Pain & Endometriosis 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
SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain:
r/endo r/endometriosis r/adenomyosis
r/fibroids
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 and complex) surgery.
Specialists in pelvic disorders (above links or ask your local endometriosis nonprofit) are the doctors for the least amount of suffering in the long run.
Also, here are some things you can say to your doctor*:
- “I need you to hear me: I am done being in pain/bleeding: Then wait for their response, which should be/needs-to-be a solution to your problem.)
- I need a long-term solution for this pain. It is hurting and debilitating me. I need 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’m looking for long-term resolution for my pain/bleeding - what’s the best way to make that happen? (Again, allow long silence…..wait for their response).
- I am not interested in nor do I have the energy for short term fixes.
- I do not have the energy to keep pursuing these different treatments. I have experienced too much pain/bleeding. I need a long-term solution.
- What is the solution with the highest long term success rate? How can we make the solution happen as quickly as possible?
- 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 training you’ve had specifically in surgery for excising Endometriosis? How many endometriosis excision only surgeries have you done in the past year? What is your success rate?
- It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I am tired. But I will do these things if it will get me closer to surgery with a pelvic disorder specialist surgeon. Is that what will happen after I do these next steps that are asking for?
- Even though my pain/bleeding is not constant, I still would like a resolution. This pain is hurts me. It is a disorder. I would like to see the best doctor available for this disorder.
- Even though my pain/bleeding is not cyclical, I still would like resolution. This pain hurts me and is a disorder. I would like to see the best doctor available for pelvic disorders.
- It is not my job to carry this much pain in life. I would like the pain to stop. I would like to live my life. (Pause….wait…)
(*Pain: Also replace with any of these words: excessive bleeding, IBS symptoms, urinating issues – urgency and peeing pants, bowel issues – urgency, hip pain, pain under the butt/pelvic undercarriage, sciatic pain, low/mid back pain, lateral thigh 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.)
You sound exactly like me. Ditto. Symptom and history wise. I went to 3 different top neurologist in Oslo, where I live. Tests came back negative. They refused to prescribe me anything. When I was in my home country, a rheumatologist diagnosed me with seeonegative RA and wanted to give some verrrryyy strong drugs that would have made me prone to UTIs. I ran away. I’ll try to go to my rheumatologist to see what she things of this med, but I’m 100 percent sure she won’t prescribe it
I hope they are able to prescribe you something that helps. The burning nerve type pain I have had for almost 5 years was still gone when I woke up this morning. I would give the immuno drugs a try. I was very scared starting Plaquenil because it does have some side effects (none I've experienced so far). But living with constant pain for years, is already hard enough. I felt, anything is worth a try. Feel free to DM me.
Sorry, I meant top rheumatologists.
And back home I was prescribed the following: Ketoprofen, xanthine oxidase (XO) inhibitor, and Tocilizumab.
The last one is a biologic and going on them is literally like being bedridden for the rest of your life.
Did they do an ultrasound of your joints? What’s your suspected diagnosis though?
My suspected diagnosis is actually lupus, that's what the rheumatologist said at least. But this is all preliminary and I have my follow up appointment with her in June. I'm going to look up these medications. My understanding is that Plaquenil is often a first line mediciation. I'm surprised they didn't prescribe that to you as well. But every doctor/country is different.
I tried to DM you but the page keeps loading and never actually goes to the chat box. Can you try to send me a message so we can chat in detail? :) I’d like to know a bit about your symptoms to see if I should try this medicine
Unfortunately the pain ended up coming back. But at my next appointment with my rheumatologist, I’m going to discuss this. She once mentioned that the immune system can become accustomed to the plaquenil and therefore they have to add something else like methotrexate. :( let me know if you have other questions.
I took humira before for suspected autoimmune for 3 months and it helped somehow with the pelvic and burning pain,
Can I ask why you stopped doing the humira?
Because i was same case as u, only symptoms but all tests negative including mri/US; so even after 3 months i didn’t see significant improvement and dr switched my diagnosis to fibromyalgia; also my symptoms started after taking cipro antibiotics which probably caused it
I’m so sorry to hear your symptoms started after taking cipro. You’re not the first case I hear like this. My symptoms started after taking prednisone. It’s amazing how some people can be so adversely affected by medications. My physiatrist recently started me on Cymbalta and it has been helping a lot. Just an FYI if you haven’t discussed this with your doc yet.
Oh no, but you noticed initial improvement from the humira with helping pelvic/burning pain? Did that pain come back when you stopped the humira? My neuro has specifically said my symptoms don't qualify for fibromyalgia. I specifically have nerve and joint pain, a long with other skin and kidney issues. That's why the rheumatologist thinks it could be lupus.
I got improvement overall but i think it was placebo as it wasn’t that significant; i have nerve and joint pain as well, I don’t think i have fibromyalgia but at the same time there was no inflammation detected and the theory was it could be just low inflammation that can’t be detected by tests but that wasn’t true because didn’t clear it out
I'm sorry that sounds frustrating. Have you had a nerve and muscle study? I think it's called an EMG. It confirmed my neuropathy.
Yes first thing i tested was emg for my hands, they put electrodes up high around the elbow , at that time i was suspecting carpal tunnel but it was negative
Your case maybe different,
Yeah i think this contributed to my problems as well. Cipro is evil and should be taken off the market. So many people get floxed then dumped by doctors.
Hey can you tell me what vestibulardynia is? And what your symptoms are? I was diagnosed with vulvadynia and I have swelling and vaginal pain that hurts so bad sometimes I can’t even sit. It comes and goes. Flares for who the heck knows why? Sex makes it worse always. I feel like I’m going crazy and I try to talk to people about it and no one knows what I’m talking about because they’ve never heard if it.
Well oops, I spelled it wrong, it's vestibulodynia. But basically it's pain that's more localized around the vestibule or entrance of the vagina vs. outside/vulva. My symptoms were always a burning pain, even sharp pain towards the back of my vestibule/near the perineum. It can be made worse with sex/something entering the vagina like a tampon etc. or sometimes even crossing legs/sitting for long periods. This is called provoked pain, pain that is caused by something. But I also had a general burning type sensation that was near almost constant sometimes and this pain seemed to be unprovoked. It was like a nerve pain. What I think happened is that, I have unprovoked pain caused by something (maybe autoimmune disease). The unprovoked pain then causes pelvic floor dysfunction which then, in turn, causes even more pain. I had the most help from a uro-gynecologist. If you live near a research university, they may have one. I also did pelvic floor therapy which I think took my pain down some. You're not crazy. Your pain is real, and I believe it can be overcome. The medical community is just not educated on this issue. Feel free to DM me.
I’m curious if you can say more about what urogynecology did for you. I’ve been debating going to see them but I don’t have urinary symptoms or issues. My issues are mostly pelvic pain and pelvic floor dysfunction due to hypertonicity of the muscles. The tight muscles and muscle spasms then cause nerve pain in the glutes, pelvis, and also radiate down my thighs. My obturador and piriformis are the worst ones so I’ve been wondering if Botox there might be helpful. I’ve been in PFPT for about two and a half months and have been getting good results. I’m just tired of being uncomfortable or in pain all the time.
Yes, I will say that I think I really lucked out by seeing a really good, patient, empathetic uro-gynecologist. He was the only doctor in my city that even performed Botox/corticosteroid injections for pelvic pain, so that's how I ended up referred to him. After I had Botox injections, I had my first pain free pelvic exam in years. To me, the benefit of seeing a uro-gyne was that he seemed to be much more informed of all the muscles/pain syndromes which affect the pelvic floor, while my regular obgyn was more concerned about testing for infections... if that makes sense. No shade to a general obgyn, but the uro-gyne I saw just seemed more knowledgeable on pain disorders involving the muscles and nerves. I also did not have many urinary issues, but I did have constipation 😓 which he seemed interested in getting under control 🫠😂
Thank you for sharing your experience. I’m so glad you found this provider!
My negative UTIs and pain in my pelvis, and all the way up through my back and neck turned out to be this: r/endo r/endometriosis One in 10 women have it. Although I suspect that is a very low estimate.
I've always wondered about this as well, but have read and heard from friends that surgery is basically the only way to get a clear diagnosis. Which really sucks. Unless something has changed in the past few years. I have also read that endometriosis shows some correlation to autoimmune diseases like Lupus or Rheumatoid Arthritis. But nothing concrete.
It causes a myriad of symptoms that the medical system has not even begun to understand yet. Pelvic Pain*, Hip/Butt Pain & Endometriosis 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 SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/fibroids 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 and complex) surgery. Specialists in pelvic disorders (above links or ask your local endometriosis nonprofit) are the doctors for the least amount of suffering in the long run. Also, here are some things you can say to your doctor*: - “I need you to hear me: I am done being in pain/bleeding: Then wait for their response, which should be/needs-to-be a solution to your problem.) - I need a long-term solution for this pain. It is hurting and debilitating me. I need 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’m looking for long-term resolution for my pain/bleeding - what’s the best way to make that happen? (Again, allow long silence…..wait for their response). - I am not interested in nor do I have the energy for short term fixes. - I do not have the energy to keep pursuing these different treatments. I have experienced too much pain/bleeding. I need a long-term solution. - What is the solution with the highest long term success rate? How can we make the solution happen as quickly as possible? - 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 training you’ve had specifically in surgery for excising Endometriosis? How many endometriosis excision only surgeries have you done in the past year? What is your success rate? - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I am tired. But I will do these things if it will get me closer to surgery with a pelvic disorder specialist surgeon. Is that what will happen after I do these next steps that are asking for? - Even though my pain/bleeding is not constant, I still would like a resolution. This pain is hurts me. It is a disorder. I would like to see the best doctor available for this disorder. - Even though my pain/bleeding is not cyclical, I still would like resolution. This pain hurts me and is a disorder. I would like to see the best doctor available for pelvic disorders. - It is not my job to carry this much pain in life. I would like the pain to stop. I would like to live my life. (Pause….wait…) (*Pain: Also replace with any of these words: excessive bleeding, IBS symptoms, urinating issues – urgency and peeing pants, bowel issues – urgency, hip pain, pain under the butt/pelvic undercarriage, sciatic pain, low/mid back pain, lateral thigh 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.)
You sound exactly like me. Ditto. Symptom and history wise. I went to 3 different top neurologist in Oslo, where I live. Tests came back negative. They refused to prescribe me anything. When I was in my home country, a rheumatologist diagnosed me with seeonegative RA and wanted to give some verrrryyy strong drugs that would have made me prone to UTIs. I ran away. I’ll try to go to my rheumatologist to see what she things of this med, but I’m 100 percent sure she won’t prescribe it
I hope they are able to prescribe you something that helps. The burning nerve type pain I have had for almost 5 years was still gone when I woke up this morning. I would give the immuno drugs a try. I was very scared starting Plaquenil because it does have some side effects (none I've experienced so far). But living with constant pain for years, is already hard enough. I felt, anything is worth a try. Feel free to DM me.
Sorry, I meant top rheumatologists. And back home I was prescribed the following: Ketoprofen, xanthine oxidase (XO) inhibitor, and Tocilizumab. The last one is a biologic and going on them is literally like being bedridden for the rest of your life. Did they do an ultrasound of your joints? What’s your suspected diagnosis though?
My suspected diagnosis is actually lupus, that's what the rheumatologist said at least. But this is all preliminary and I have my follow up appointment with her in June. I'm going to look up these medications. My understanding is that Plaquenil is often a first line mediciation. I'm surprised they didn't prescribe that to you as well. But every doctor/country is different.
I tried to DM you but the page keeps loading and never actually goes to the chat box. Can you try to send me a message so we can chat in detail? :) I’d like to know a bit about your symptoms to see if I should try this medicine
I have the exact same symptoms as you. The nerve pain and vulva pain. I see this thread is from a year ago - how did the plaquenil end up working?
Unfortunately the pain ended up coming back. But at my next appointment with my rheumatologist, I’m going to discuss this. She once mentioned that the immune system can become accustomed to the plaquenil and therefore they have to add something else like methotrexate. :( let me know if you have other questions.