Hello everyone!
My name is Julia. English is my second language, so I'm sorry in advance for any mistakes.
My pain has started in February, 2014, at my first year at University.
It began on the first day of my period, so I thought it was OK, just another type of menstrual cramps.
The pain was shooting, through my perineum and pelvic floor. It was gone the next day.
Unfortunately, it returned in two weeks, and kept returning every week or so.
But when I lay down, the pain was gone, I felt nothing at all. If I stand up, it was coming back.
We ran some checks, MRI, blood checks - all came back normal.
But one gynecologist supposed I might have endometriosis which can cause this type of pain.
She started treatment with homeopathy (I know, crazy, right?), I left the city for summer vacation, and in August the pain disappeared.
For almost a year I thought this nightmare is gone, but after a huge stress it came back. May 2015.
Since then, I am experiencing a wide range of symptoms, and there is absolutely no explanation for them:
1. Shooting pains are almost gone.
2. Sometimes I'm experiencing sharp, knife-like pains in my perineum, the only way to make them go away is to lay all day long. They might go away next day, might stay.
3. Pain in rectum after bowel movement, happens rarely, but still. It feels like a really sharp spasm. And, yes, the only thing to do - lying down.
4. Since January 2016 I'm experiencing some strange pains in my belly. The area around the navel is sore to touch, sometimes I have needle-like pains inside my navel.
5. Pain in right lower abdomen. Feels like toothache, may be dull, sharp etc.
Pain usually starts after some physical activity like lifting something heavy (more than 1kg by now), squat or something like that.
Another possible reason - prolonged sitting. But sometimes it seems there is no reason at all.
Painkillers mostly do not help.
What I have done/checked:
1. Gynecology: everything is OK. Endometriosis seems to be excluded.
2. No hernia in navel. Gosh, I got checked that sooo many times.
3. Tried 2 osteopaths: they seem unable to explain what is causing all that. Always new versions.
4. I have IBS - gases, the digestive system is always irritated, but guess what - NO REASON. Healthy by checks.
I just have no idea what to do.
All I want to ask is - Has anyone here experienced something like that? Not only an unexplainable pain in perineum, but also in lower abdomen & navel.
The last one began recently, I don't know whether these symptoms are connected or not, but I feel like all this thing is worsened every year.
Yeah, I have a huge depression. Feeling of... emptiness. I keep asking the universe about the injustice.
Not sure if I could ever have a normal life.
19 years old & 2.5 years of pain
Re: 19 years old & 2.5 years of pain
Hi Julia,
I'm the woman who has written the post "A different view of PGAD” (Nr. 21 on the welcome side, last post 28.06.) I have no solution, but I have a different view of all this pain and terrible irritations in this area.
What you write is absolutely correct and possible. Just a few weeks ego, I lay in bed and pressed a bit on my navel. I noticed that a beam of sexual sensation and pain shot through my navel and belly down to the clitoris. Of course I had a look at the Internet, but I found no scientific explanations. But, I found women and men too who reported the same thing. If they cleaned the navel or touched it, they felt it in their clitoris, their vagina or the men at the tip of the penis, sometimes also felt as mild pain. For me, here are nerve connections of which science, it seems, has no idea and most of all, this is my opinion, is not interested in. For me these are nerves of the autonomous nervous system.
I also observed, and other women confirm this, that to bend down is quite problematically. The pain, the chafing and especially the feelings in the clitoris, at the perineum and in the belly too, become quite strong, and the nervous system in this area becomes excited. Perhaps this is the reason why sitting is so painfull. Sitting is a similar position for the nervous system as bending. You are right, lifting something has the same effect on the nervous system in this area.
In my post I have written about the Chakras the East knows. I don't want to discuss about Eastern Philosophy, but we have to know that the East knows a lot about the nervous system, more than the West. The first Chakra lies at the perineum and at the end of the coccyx. There must be nerve plexi of the autonomous nervous system and that is why the pain at the perineum and in the anus is so terrible. The second Chakra or the so called sexual Chakra is in the belly. In Japan they know the "Hara Chakra" near the navel, one of the main Chakras (nerve plexi) of our body. Today I think, if these nerve plexi are activated by the autonomous and endocrine nervous system, the pain starts.
Western physicians don't know about these coherences. Most of all the pain is happening over the autonomous nervous system in the brain, that means, medication doesn't work and there is no physical reason in the body. And it means, it has a lot to do with our emotions and of course with stress.
You are such a young lady and perhaps you think about another way to go, because you can't live your life in bed to have no pain.
There are some famous American trauma researchers – Robnert Scaer, Peter Levine, John E. Sarno – who know a lot about stress and pain over the autonomous nervous system. Peter Levine developed a method of “communicating” with the autonomous nervous system, that means with our feelings. So the brain is able to put the stress we have at the right place. He calls his method “Somatic Experiencing”. Here in Germany a lot of therapists are working with his method and who are certificated by him. Perhaps you have a look at the internet in your country. I am sure, his method is known world wide. And perhaps you read some of the books of these authors.
I received these advises from another member of this forum and I am very grateful. Perhaps you read our conversation under my above written post. You needn't experienced a big trauma in your life. Sometimes a little car accident, have been fallen on the coccyx or other on the first view normal life events can drive the autonomous nervous system into this pain situation.....and as you observed, more and more.
Aristocat
I'm the woman who has written the post "A different view of PGAD” (Nr. 21 on the welcome side, last post 28.06.) I have no solution, but I have a different view of all this pain and terrible irritations in this area.
What you write is absolutely correct and possible. Just a few weeks ego, I lay in bed and pressed a bit on my navel. I noticed that a beam of sexual sensation and pain shot through my navel and belly down to the clitoris. Of course I had a look at the Internet, but I found no scientific explanations. But, I found women and men too who reported the same thing. If they cleaned the navel or touched it, they felt it in their clitoris, their vagina or the men at the tip of the penis, sometimes also felt as mild pain. For me, here are nerve connections of which science, it seems, has no idea and most of all, this is my opinion, is not interested in. For me these are nerves of the autonomous nervous system.
I also observed, and other women confirm this, that to bend down is quite problematically. The pain, the chafing and especially the feelings in the clitoris, at the perineum and in the belly too, become quite strong, and the nervous system in this area becomes excited. Perhaps this is the reason why sitting is so painfull. Sitting is a similar position for the nervous system as bending. You are right, lifting something has the same effect on the nervous system in this area.
In my post I have written about the Chakras the East knows. I don't want to discuss about Eastern Philosophy, but we have to know that the East knows a lot about the nervous system, more than the West. The first Chakra lies at the perineum and at the end of the coccyx. There must be nerve plexi of the autonomous nervous system and that is why the pain at the perineum and in the anus is so terrible. The second Chakra or the so called sexual Chakra is in the belly. In Japan they know the "Hara Chakra" near the navel, one of the main Chakras (nerve plexi) of our body. Today I think, if these nerve plexi are activated by the autonomous and endocrine nervous system, the pain starts.
Western physicians don't know about these coherences. Most of all the pain is happening over the autonomous nervous system in the brain, that means, medication doesn't work and there is no physical reason in the body. And it means, it has a lot to do with our emotions and of course with stress.
You are such a young lady and perhaps you think about another way to go, because you can't live your life in bed to have no pain.
There are some famous American trauma researchers – Robnert Scaer, Peter Levine, John E. Sarno – who know a lot about stress and pain over the autonomous nervous system. Peter Levine developed a method of “communicating” with the autonomous nervous system, that means with our feelings. So the brain is able to put the stress we have at the right place. He calls his method “Somatic Experiencing”. Here in Germany a lot of therapists are working with his method and who are certificated by him. Perhaps you have a look at the internet in your country. I am sure, his method is known world wide. And perhaps you read some of the books of these authors.
I received these advises from another member of this forum and I am very grateful. Perhaps you read our conversation under my above written post. You needn't experienced a big trauma in your life. Sometimes a little car accident, have been fallen on the coccyx or other on the first view normal life events can drive the autonomous nervous system into this pain situation.....and as you observed, more and more.
Aristocat
Re: 19 years old & 2.5 years of pain
Julia,
The symptoms you are describing are mostly things we hear about commonly on this forum.
I noticed you said your symptoms were worse during a time of huge stress. You might want to read Nonsequitur's and Ezer's posts on this forum about somataform disorder and the mindbody approach.
I don't know what your osteopaths checked for. My understanding is that the psoas muscle can play a role in causing abdominal pain. Has anyone checked your pelvic floor for tension, including the obturator internus muscle and levator ani muscles? Maybe you can find a PT who specializes in the pelvis and pelvic floor so they can check to see if your muscles are overly tense and contracted.
I used to have a lot of IBS problems but it's mostly gone if I take magnesium citrate tablets daily. Mag citrate can keep BM's regular and the dose can be adjusted to keep BM's the consistency of applesauce so you don't get backed up. You could try a warm sitz bath if you have pain after a BM.
I think if you have chronic pain, over time, more and more muscles can become tense and cause more and more symptoms. I'm sure there is some healthcare provider out there who can help you with the right treatment. I just hope you will be able to find someone in your country. The mindbody approach is something you can do by yourself if you read and follow Ezer's posts. I think you can get better with the right treatment.
Violet
The symptoms you are describing are mostly things we hear about commonly on this forum.
I noticed you said your symptoms were worse during a time of huge stress. You might want to read Nonsequitur's and Ezer's posts on this forum about somataform disorder and the mindbody approach.
I don't know what your osteopaths checked for. My understanding is that the psoas muscle can play a role in causing abdominal pain. Has anyone checked your pelvic floor for tension, including the obturator internus muscle and levator ani muscles? Maybe you can find a PT who specializes in the pelvis and pelvic floor so they can check to see if your muscles are overly tense and contracted.
I used to have a lot of IBS problems but it's mostly gone if I take magnesium citrate tablets daily. Mag citrate can keep BM's regular and the dose can be adjusted to keep BM's the consistency of applesauce so you don't get backed up. You could try a warm sitz bath if you have pain after a BM.
I think if you have chronic pain, over time, more and more muscles can become tense and cause more and more symptoms. I'm sure there is some healthcare provider out there who can help you with the right treatment. I just hope you will be able to find someone in your country. The mindbody approach is something you can do by yourself if you read and follow Ezer's posts. I think you can get better with the right treatment.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: 19 years old & 2.5 years of pain
Aristocat, Violet, thank you so much for your response!
Now I am trying to get on with books and methods that you had advised.
Aristocat, I found some topics about "Somatic Experiencing" in our country, although therapists do not seem to be working with this method.
I guess, I should try to work with it on my own.
The trauma - well, I fell on coccyx when I was younger, about 8 years ago. But it didn't seem to bother me before I went to University. So I am not sure that the fall could be the reason for all that.
Although, about all methods.. I do not know, whether it's normal or not, but I am a little bit scared to look into myself. There is so much going on inside me so I do not really want to face or understand that. That must sound quite strange, but that's how I feel.
Violet, osteopaths have found that all muscles are at great tension, and they tried to fix that - but I only developed new symptoms, and no relief at all. I am actually scared to go on with that, because they say they have no idea what is causing that, and they could not describe what manipulations they must do, and - huh - they can't forsee the consequences of their treatment. So I put that on a hold.
You said that "more and more muscles can become tense and cause more and more symptoms", that is the exact same thing I do suppose.
Oh, we are desperately trying to find good specialists, but now.. We just have no idea where to go. There are so much contrary opinions..
For now, can I have some piece of advice?
We are thinking about starting to take antidepressant called "Cymbalta". I have read so much about side effects, and I am not sure what to do.
Should I give it a try? Some doctors say I should take them and the pain will vanish, some doctors say that I certainly should not do that.
Or maybe I should try to find another specialist.. Or.. I should work on my own, trying to beat this by myself?
Now I am trying to get on with books and methods that you had advised.
Aristocat, I found some topics about "Somatic Experiencing" in our country, although therapists do not seem to be working with this method.
I guess, I should try to work with it on my own.
The trauma - well, I fell on coccyx when I was younger, about 8 years ago. But it didn't seem to bother me before I went to University. So I am not sure that the fall could be the reason for all that.
Although, about all methods.. I do not know, whether it's normal or not, but I am a little bit scared to look into myself. There is so much going on inside me so I do not really want to face or understand that. That must sound quite strange, but that's how I feel.
Violet, osteopaths have found that all muscles are at great tension, and they tried to fix that - but I only developed new symptoms, and no relief at all. I am actually scared to go on with that, because they say they have no idea what is causing that, and they could not describe what manipulations they must do, and - huh - they can't forsee the consequences of their treatment. So I put that on a hold.
You said that "more and more muscles can become tense and cause more and more symptoms", that is the exact same thing I do suppose.
Oh, we are desperately trying to find good specialists, but now.. We just have no idea where to go. There are so much contrary opinions..
For now, can I have some piece of advice?
We are thinking about starting to take antidepressant called "Cymbalta". I have read so much about side effects, and I am not sure what to do.
Should I give it a try? Some doctors say I should take them and the pain will vanish, some doctors say that I certainly should not do that.
Or maybe I should try to find another specialist.. Or.. I should work on my own, trying to beat this by myself?
Re: 19 years old & 2.5 years of pain
I think many people have used medications safely to help their symptoms temporarily to help keep the pain under control. I think the important thing with cymbalta is to start out on a low dose so your body adjusts to it and if you decide to quit taking it, to wean off slowly. People who take cymbalta for neuropathic pain often take lyrica (pregbalin) with it for more relief of symptoms. I'm not sure your pain will vanish as they say but it might improve. I would see this as a temporary solution though until you can figure out the underlying cause.
I would be afraid to have more osteopathic manipulations too. I don't know if you have physiotherapists who treat pelvic pain in your country -- with techniques like myofascial release of the pelvic floor which is not the same as osteopathic manipulations. If you can't find a physiotherapist who does this, maybe just a massage therapist could help you work out any tension in the abdominal muscles, back muscles, or buttock muscles. Or if you are able to try water therapy in a warm water pool that might help to relax the muscles.
Violet
I would be afraid to have more osteopathic manipulations too. I don't know if you have physiotherapists who treat pelvic pain in your country -- with techniques like myofascial release of the pelvic floor which is not the same as osteopathic manipulations. If you can't find a physiotherapist who does this, maybe just a massage therapist could help you work out any tension in the abdominal muscles, back muscles, or buttock muscles. Or if you are able to try water therapy in a warm water pool that might help to relax the muscles.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.