New here...
New here...
Hi, for two years I've thought pelvic dysfunction was the problem similar symptoms even though I'm not pregnant and started physio and acupuncture. The problem is I didn't get any better. The compression feeling is now so bad it never goes away. I have an office job but sitting hurts and standing I get pain in my feet and knees and it's like a heavy dragging feeling in my pelvis together with the burning and discomfort in my tailbone..... I was very depressed under winter. All the things I love doing and took for granted, going to the gym, long challenging walks, throwing pottery just aggravate the pain. I have an appointment with a gynaecologist next week. I live in Sweden haven't been able to find any info locally. I really don't want it to be PN or PNE.... However it's the only diagnosis that I've found that fits my symptoms. My husband is very supportive and my daughter understanding she's only 12 but helps with carrying shopping bags ..... We can't go running together anymore. I just want the pain to go away. I'm hoping I get a good doctor next week as I feel hopeless and I know I'm going to need to be pushy to get a diagnosis and treatment. I could really do with some positive encouragement right now. .....
Re: New here...
Hi Jooles
Having a supportive husband and daughter i feel sure will get you through this - my husband has been so supportive of me I'm not sure how i would have been without him.He came to most of my appointments and took notes and even asked questions.
Try to focus on what you can do rather than mourn the past - i have had to pull away from focusing on the past as it was making me feel depressed. My daughter is much older but i don't commit to doing things with her so much now that i would readily have done easily before.She knows though that i would do anything i can for her and i am sure your daughter knows that of you as well.
Hope that your gynae appointment goes well.
Rosemary x
Having a supportive husband and daughter i feel sure will get you through this - my husband has been so supportive of me I'm not sure how i would have been without him.He came to most of my appointments and took notes and even asked questions.
Try to focus on what you can do rather than mourn the past - i have had to pull away from focusing on the past as it was making me feel depressed. My daughter is much older but i don't commit to doing things with her so much now that i would readily have done easily before.She knows though that i would do anything i can for her and i am sure your daughter knows that of you as well.
Hope that your gynae appointment goes well.
Rosemary x
Re: New here...
Thank you Rosemary.
I'm finding it very hard to accept that it's getting worse instead of better! I should try be more positive,...
I'm finding it very hard to accept that it's getting worse instead of better! I should try be more positive,...
Re: New here...
Hi Jooles,
Rosemary said it well. I have no children but do have the supportive husband. My focus was on the diagnosis and treatments in hopes of getting better to continue working and of course enjoy some fun stuff. Best of luck.
Janet
Rosemary said it well. I have no children but do have the supportive husband. My focus was on the diagnosis and treatments in hopes of getting better to continue working and of course enjoy some fun stuff. Best of luck.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: New here...
The gynae may have the answer/diagnosis for you - just take one step at a time. XJooles67 wrote:Thank you Rosemary.
I'm finding it very hard to accept that it's getting worse instead of better! I should try be more positive,...
Rosemary x
Re: New here...
Thank you for your kind words everyone, I really appreciate.
Today something happened that has taken the pain to new heights. I ended up with a hemarrhoid and I'm not even constipated but I now have excrutiating pain. I drove home from work and ended up in tears. I wonder if anyone else has a similar experience? The pain is usually mostly in my right buttock but has now radiated out into the left one too and my whole pelvic region and lower back is incredibly painful....even the pain between my legs escallated.
Today something happened that has taken the pain to new heights. I ended up with a hemarrhoid and I'm not even constipated but I now have excrutiating pain. I drove home from work and ended up in tears. I wonder if anyone else has a similar experience? The pain is usually mostly in my right buttock but has now radiated out into the left one too and my whole pelvic region and lower back is incredibly painful....even the pain between my legs escallated.
Re: New here...
Hi Joules
I can't comment any further as my pain/tight muscles are mainly in the rightside vulva area.
I hope that someone else replies to you soon.
It is often suggested on here that you take a print out of the Pudendal Symptoms on the Home Page to a doctor so that they can recognise possible PN .
http://www.pudendalhope.info/node/9
It does sound like you may need to go beyond a gynaecologist.
Take Care X
Rosemary x
I can't comment any further as my pain/tight muscles are mainly in the rightside vulva area.
I hope that someone else replies to you soon.
It is often suggested on here that you take a print out of the Pudendal Symptoms on the Home Page to a doctor so that they can recognise possible PN .
http://www.pudendalhope.info/node/9
It does sound like you may need to go beyond a gynaecologist.
Take Care X
Rosemary x
Re: New here...
Thank you Rosemary,
I am trying to compile a medical history and a list of symptoms that fit my condition to help the doctor on Monday.
I feel rather confused at the moment. I've had periods when I've been much better. I cannot remember any injury what started the current 2 year problem was when I was out running. Afterwards I was in agony and just assumed it was pelvic dysfunction. Little short history of me. I had surgery for endometriosis 2001 where something went wrong and I lost the ability to have proper orgasms. I had the surgery just before moving permanently to Sweden. I asked a couple of gynecologists if this could be contributed to the surgergy they said I was uptight and that's why I wasn't having orgasms!! This from women. I had my daughter the year after almost to the day. During the birth I was pushing for over 3 hours. Afterwards they saw that my bladder had been WAY over full and that's why I had problems getting her out. When I started running after about a year and a half I had severe incontinence which was very embarassing as I was out with work colleagues running during my lunch hour. My second pregnancy I had severe pubis dysfunction I only had a little with Olivia in the last 2-3 months. With Max I had it from week 11 and was signed off sick. I had physio and acupuncture twice a week had crutches could barely walk and shooting pains stabbing pains in my pubis and pain over the whole pelvic area. Sadly my baby boy was stillborn at around 33 weeks of the pregnancy. I was operated on after the birth to get the placenta out as it would not come away. I fell into a deep depression and was off work sick in total four around 3 years. The problem with my pelvis never really went away. I could quite suddenly have the knife pains and the feeling that my legs would give way. It was however fully manageble I trained tried to run, somethings successfully without peeing myself. Enjoyed spinning at the gym but this gave me often extreme sensitivit in the pernium - which I ignored thinking it was training pains!!
Anyway around 2 years ago after a run things became pretty bad. I started seeing a physio who treated me for pelvic floor problems. I was not really that good at doing the exercises and complained that it made things worse. I had a tens machine under a couple of months which was great. Then it became a pain level that was managable so I ignored it and just carried on doing things as usual. I have a pretty stressful job I do however have a truly wonderful boss. She has supported me throughout. Last year the problem started getting a bit worse so same routing doctor this time instead of physio first, I had x-rays which showed nothing. Physio said it was pelvic dysfunction.
I am trying to compile a medical history and a list of symptoms that fit my condition to help the doctor on Monday.
I feel rather confused at the moment. I've had periods when I've been much better. I cannot remember any injury what started the current 2 year problem was when I was out running. Afterwards I was in agony and just assumed it was pelvic dysfunction. Little short history of me. I had surgery for endometriosis 2001 where something went wrong and I lost the ability to have proper orgasms. I had the surgery just before moving permanently to Sweden. I asked a couple of gynecologists if this could be contributed to the surgergy they said I was uptight and that's why I wasn't having orgasms!! This from women. I had my daughter the year after almost to the day. During the birth I was pushing for over 3 hours. Afterwards they saw that my bladder had been WAY over full and that's why I had problems getting her out. When I started running after about a year and a half I had severe incontinence which was very embarassing as I was out with work colleagues running during my lunch hour. My second pregnancy I had severe pubis dysfunction I only had a little with Olivia in the last 2-3 months. With Max I had it from week 11 and was signed off sick. I had physio and acupuncture twice a week had crutches could barely walk and shooting pains stabbing pains in my pubis and pain over the whole pelvic area. Sadly my baby boy was stillborn at around 33 weeks of the pregnancy. I was operated on after the birth to get the placenta out as it would not come away. I fell into a deep depression and was off work sick in total four around 3 years. The problem with my pelvis never really went away. I could quite suddenly have the knife pains and the feeling that my legs would give way. It was however fully manageble I trained tried to run, somethings successfully without peeing myself. Enjoyed spinning at the gym but this gave me often extreme sensitivit in the pernium - which I ignored thinking it was training pains!!
Anyway around 2 years ago after a run things became pretty bad. I started seeing a physio who treated me for pelvic floor problems. I was not really that good at doing the exercises and complained that it made things worse. I had a tens machine under a couple of months which was great. Then it became a pain level that was managable so I ignored it and just carried on doing things as usual. I have a pretty stressful job I do however have a truly wonderful boss. She has supported me throughout. Last year the problem started getting a bit worse so same routing doctor this time instead of physio first, I had x-rays which showed nothing. Physio said it was pelvic dysfunction.
Re: New here...
Huge hug Joules - you have been through an awful lot - so so sorry for your loss.
Have you found a uk pelvic pain website ?- pelvicpain.org.uk which has a message board - a founder lady on there called Judy B knows about endometriosis - she maybe able to help you further in that respect.
I also typed up my medical history and gave it to each consultant i saw - left copies with them which went in with my notes. I didn't want to just trust a referral letter from my doctor - which i hadn't seen -to cover everything.
Hope that it goes well on Monday. X
Rosemary x
Have you found a uk pelvic pain website ?- pelvicpain.org.uk which has a message board - a founder lady on there called Judy B knows about endometriosis - she maybe able to help you further in that respect.
I also typed up my medical history and gave it to each consultant i saw - left copies with them which went in with my notes. I didn't want to just trust a referral letter from my doctor - which i hadn't seen -to cover everything.
Hope that it goes well on Monday. X
Rosemary x
Re: New here...
Thank you Janet.janetm2 wrote:Hi Jooles,
Rosemary said it well. I have no children but do have the supportive husband. My focus was on the diagnosis and treatments in hopes of getting better to continue working and of course enjoy some fun stuff. Best of luck.
Janet
I think you are right I need to really focus on getting a diagnosis. My husband is a little worried that I think I can diagnose myself based on all I've read so far so I'm trying to keep an open mind about this. I will give any treatment the best shot but hope for non-invasive treatments as surgeries so far have not been always so good for me.....
Take care and thank you for taking the time to write a reply... Julie