Right age, 55 in August, but thats where any similarities end. I know my problems are from a fall 3 years ago.Why do I always admit my age on my next birthday? ? DUH!
Helen
Were you born between 1950 and 1960?
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Were you born between 1950 and 1960?
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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catherine a
- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Re: Were you born between 1950 and 1960?
I'm now 56 and have been giving this some thought. I was asked if I have a family history of pelvic problems. I said no I didn't but in hindsight my memories of my mother are making me think that perhaps she did suffer pelvic pain herelf. She never did talk to any of us about her health but all through my teenage years my mother always walked very very slowly with heavy shopping bags. she always said her back is killing her but I now wonder if she had PN symptoms. As a teenager I didn't take much notice of my mother's pain, I thought she was just getting old. She had 12 children and I am the ninth child. My father is not alive for me to ask him either. She passed away in 1987 and I tried to get her medical records but found out that they were destroyed 10 years after death, so they would have been destroyed long before I had PNE. Even if she did have these type of symptoms I don't think she would have ever mentioned it to the doctor anyway. Past generations didn't talk about this sort of thing. Especially in my own family. Some people even today avoid talking about the lower extremities as though it is Shameful. One day i'd like to see the word Pudendal change as it means 'Shameful"
However, I do remember many years back when I was in my 30"s I stopped using tampons because it 'Hurt' when I pulled it out. A feeling of dryness and the flesh inside the vagina being tugged at. I thought nothing of it at the time and it wasn't something that ever came up in conversation. I just assumed other people might feel the same.
Another problem I had and used to laugh at, was a quick shock like surge up my rectum. Making me jump off my seat. My work colleagues would ask "what the hell's wrong with you? but I'd be laughing at the absurdity of telling them I had an electic shock shoot up my rectum. This only happened intermittently and it didn't really worry me.
My PN was brought about after pelvic surgery but a few weeks prior to that surgery I was admitted for a D&C so the surgeon could have a look inside the uterus. (Endometrial Hyperplasia) He also explained that I was having a bowel prolapse where my rectum had attached itself to the back wall of vagina. (I did have a problem with constiptaion for a very long time but I thought it was 'Normal' at my age to be constipated.) In the days following that D&C I did have a feeling of an object in the rectum but not painful. I assumed it was because the gynaecologist had been poking around in there and I also assumed it would be all ok after the repair surgery to separate the rectum from the vaginal wall. I didn't even think to mention it to the doctor. Now I know that it was not 'Normal'
I also have very bad posture, have been round shouldered all my life. My phsyio tells that my back is not straight because my pelvis is tilted towards the back and I need to train my posture to bring my pelvis forward. Not easy since my pelvis has probably been like this all my life. I'm only a little over 5ft and I've never been very active. Just walking and swimming, but I did lift very heavy furniture in my husbands business (he used to make heavy boardroom tables and dining suites from solid timber.) I used to cry with back pain so bad I ended up quitting and telling him I can't do this any more. I reckon all the heavy lifting and giving birth to twins etc. has been the culprit here and the pelvic surgery was what brought it to a head. I could be wrong of course, I don't know. sometimes I think the sutures didn't hold in my pelvic floor surgery as I felt the 'shifting ' feeling deep in the buttock before the PN pain started. Could be a combination of all as well as the anatomy. Another thing is I've been Vegetarian for the past 20 years but have always had a very good blood count. I've never been anaemic. I stick to an Asian vegetarian diet with lots of iron & protein.
Catherine
However, I do remember many years back when I was in my 30"s I stopped using tampons because it 'Hurt' when I pulled it out. A feeling of dryness and the flesh inside the vagina being tugged at. I thought nothing of it at the time and it wasn't something that ever came up in conversation. I just assumed other people might feel the same.
Another problem I had and used to laugh at, was a quick shock like surge up my rectum. Making me jump off my seat. My work colleagues would ask "what the hell's wrong with you? but I'd be laughing at the absurdity of telling them I had an electic shock shoot up my rectum. This only happened intermittently and it didn't really worry me.
My PN was brought about after pelvic surgery but a few weeks prior to that surgery I was admitted for a D&C so the surgeon could have a look inside the uterus. (Endometrial Hyperplasia) He also explained that I was having a bowel prolapse where my rectum had attached itself to the back wall of vagina. (I did have a problem with constiptaion for a very long time but I thought it was 'Normal' at my age to be constipated.) In the days following that D&C I did have a feeling of an object in the rectum but not painful. I assumed it was because the gynaecologist had been poking around in there and I also assumed it would be all ok after the repair surgery to separate the rectum from the vaginal wall. I didn't even think to mention it to the doctor. Now I know that it was not 'Normal'
I also have very bad posture, have been round shouldered all my life. My phsyio tells that my back is not straight because my pelvis is tilted towards the back and I need to train my posture to bring my pelvis forward. Not easy since my pelvis has probably been like this all my life. I'm only a little over 5ft and I've never been very active. Just walking and swimming, but I did lift very heavy furniture in my husbands business (he used to make heavy boardroom tables and dining suites from solid timber.) I used to cry with back pain so bad I ended up quitting and telling him I can't do this any more. I reckon all the heavy lifting and giving birth to twins etc. has been the culprit here and the pelvic surgery was what brought it to a head. I could be wrong of course, I don't know. sometimes I think the sutures didn't hold in my pelvic floor surgery as I felt the 'shifting ' feeling deep in the buttock before the PN pain started. Could be a combination of all as well as the anatomy. Another thing is I've been Vegetarian for the past 20 years but have always had a very good blood count. I've never been anaemic. I stick to an Asian vegetarian diet with lots of iron & protein.
Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
Re: Were you born between 1950 and 1960?
Last year my mother's sister died after a lifetime of pain and depression and in her later years, agoraphobia (fear of leaving the house). She was only 73 years old when she died. My mother always told me that my aunt had back problems. Only after my aunt died did I ask my mother for details. It turned out that my aunt had had endometriosis, like me. Also, at about my age she had to go on disability from a good desk job because she could no longer sit at her desk! I was dumbfounded. But the news strengthened my resolve not to let my pain take over my life as it did my aunt's. I never knew her since she stayed in my mother's home country when my mother came to North America.catherine a wrote: I was asked if I have a family history of pelvic problems. I said no I didn't but in hindsight my memories of my mother are making me think that perhaps she did suffer pelvic pain herelf. She never did talk to any of us about her health but all through my teenage years my mother always walked very very slowly with heavy shopping bags. she always said her back is killing her but I now wonder if she had PN symptoms.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: Were you born between 1950 and 1960?
I just have to say that I have enjoyed reading all your stories. Life is harder than we expect it's going to be!
As Lernica mentioned, I too am an identical twin. My sis and are very close even though we live 1200 miles away from each other. We usually talk at least once a day, and the last 18 years have been difficult for us. I married my husband 18 yrs ago and then a month later we moved to Michigan.
My sister is the younger twin but I was always the sickly one when we were growing up. We both have had two children: a boy first and then a girl. She had her son c-section, and then 7 yrs later decided to have her daughter c-section also. I on the other hand, had both of mine vaginally (and mine were bigger). But I gave birth in Michigan and they are way more conservative when it comes to interventions.
Anyway, as an adult she has had issues with UTI's. She has a bladder sling and had an ablation that really didn't take. Recently, she was having issues with bladder pain. Possible bladder infection? At one point, the dr even mentioned the possibility of ICS. I prayed that she would not ever have to deal with that kind of pain! The pain seems to have subsided so she's doing ok now.
We both deal with anxiety and depression. It started for both of us in middle school/high school, but back in the 70's and 80's they really didn't know much about it. Not until we were in our 30's and mothers with that added stress and anxiety did we get help for it. I think our geographical separation has also added to our depression.
I also wanted mention that I think the only way my mom's dr knew that she was pregnant with twins was that he heard two heartbeats. But my mom was diagnosed with cervical cancer not long after she found out she was pregnant. In 1963 abortion was not legal so she had to go to court to get the right to terminate her pregnancy if it endangered her life due to the cancer. She had a biopsy done in the hospital and it showed that the cancer was not going to affect the baby so her prayers were answered. She did have to have a hysterectomy 6 weeks after we were born. They expected us to be very small and have breathing problems but that was not the case. We were born vaginally 2 weeks early. I weighed a hefty 5 lbs 13 ozs and my sis was 6 lb 3 ozs. and we were very healthy.
Sorry for such a long post!
As Lernica mentioned, I too am an identical twin. My sis and are very close even though we live 1200 miles away from each other. We usually talk at least once a day, and the last 18 years have been difficult for us. I married my husband 18 yrs ago and then a month later we moved to Michigan.
My sister is the younger twin but I was always the sickly one when we were growing up. We both have had two children: a boy first and then a girl. She had her son c-section, and then 7 yrs later decided to have her daughter c-section also. I on the other hand, had both of mine vaginally (and mine were bigger). But I gave birth in Michigan and they are way more conservative when it comes to interventions.
Anyway, as an adult she has had issues with UTI's. She has a bladder sling and had an ablation that really didn't take. Recently, she was having issues with bladder pain. Possible bladder infection? At one point, the dr even mentioned the possibility of ICS. I prayed that she would not ever have to deal with that kind of pain! The pain seems to have subsided so she's doing ok now.
We both deal with anxiety and depression. It started for both of us in middle school/high school, but back in the 70's and 80's they really didn't know much about it. Not until we were in our 30's and mothers with that added stress and anxiety did we get help for it. I think our geographical separation has also added to our depression.
I also wanted mention that I think the only way my mom's dr knew that she was pregnant with twins was that he heard two heartbeats. But my mom was diagnosed with cervical cancer not long after she found out she was pregnant. In 1963 abortion was not legal so she had to go to court to get the right to terminate her pregnancy if it endangered her life due to the cancer. She had a biopsy done in the hospital and it showed that the cancer was not going to affect the baby so her prayers were answered. She did have to have a hysterectomy 6 weeks after we were born. They expected us to be very small and have breathing problems but that was not the case. We were born vaginally 2 weeks early. I weighed a hefty 5 lbs 13 ozs and my sis was 6 lb 3 ozs. and we were very healthy.
Sorry for such a long post!
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
Re: Were you born between 1950 and 1960?
Wow Griff, what a story about your mom! One day she gives birth to twelve pounds of babies and six weeks later she has a hysterectomy, probably a full abdominal one judging by the year (1963). She must've had alot of help recovering at home with you two to look after. My mother had a very very hard time during our first winter in the Canadian hinterland with no family supports in place. I do believe that women had it alot harder back then, domestically. Certainly it's been much easier for me than it was for my mom.
Thanks for sharing your story.
Thanks for sharing your story.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: Were you born between 1950 and 1960?
Well, I'm a little past the 1960 date but have found this thread very interesting. I was wondering if there might be some anatomical predisposition to PN just because of genetics. My mother's mother, and my mom both had hysterectomies in their early 40's due to fibroids in the uterus and so I was not surprised when I was diagnosed with fibroids in my early 40's as there is a genetic link to fibroids.
My mom and I were doing some genealogy together and talked about the IC her mother had and an aunt who had a prolapse that used a pessary. Interestingly, other than that she doesn't remember any of the other relative women complaining of anything unusual and she felt something like this would have been discussed among "the women folk." She feels this way because her and all her 1st cousins (there were ALOT of them) were born at grandma's house and women always attended the births so there didn't seem to be a huge stigma about pains in any private areas. My mom thinks that one of the problems individuals have today is the lack of good core strength and pelvic floor strength like the women in her life when she grew up that worked on farms and had good pelvic floor strength. She contributes the lack of strength to desk jobs. Anyway, was an interesting discussion with my mom.
My mom and I were doing some genealogy together and talked about the IC her mother had and an aunt who had a prolapse that used a pessary. Interestingly, other than that she doesn't remember any of the other relative women complaining of anything unusual and she felt something like this would have been discussed among "the women folk." She feels this way because her and all her 1st cousins (there were ALOT of them) were born at grandma's house and women always attended the births so there didn't seem to be a huge stigma about pains in any private areas. My mom thinks that one of the problems individuals have today is the lack of good core strength and pelvic floor strength like the women in her life when she grew up that worked on farms and had good pelvic floor strength. She contributes the lack of strength to desk jobs. Anyway, was an interesting discussion with my mom.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
Re: Were you born between 1950 and 1960?
Dr. Bautrant feels there is a genetic component to PNE because he has done surgery on women in the same family including a mother, daughter, and grandmother - 3 generations.
My great-grandmother was in a mental hospital partly because she had a lot of "female problems". My mom has suffered from mild PN-type symptoms since a hysterectomy many years ago only she didn't know that's what it was until I was diagnosed with PNE.
NYT, I suspect there is some truth to your mom's theory although there is published literature concluding that if you develop pelvic floor prolapses at a young age it can be due to a genetic collagen deficiency. Unfortunately, for some women working on a farm and heavy lifting would actually cause further damage to the ligaments. That's exactly what happened to me -- only not from working on a farm
-- my problems stemmed from weightlifting.
My great-grandmother was in a mental hospital partly because she had a lot of "female problems". My mom has suffered from mild PN-type symptoms since a hysterectomy many years ago only she didn't know that's what it was until I was diagnosed with PNE.
NYT, I suspect there is some truth to your mom's theory although there is published literature concluding that if you develop pelvic floor prolapses at a young age it can be due to a genetic collagen deficiency. Unfortunately, for some women working on a farm and heavy lifting would actually cause further damage to the ligaments. That's exactly what happened to me -- only not from working on a farm
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.