With respect to the IUD - my neurologist and gynecologist were not in favor of it for me. Specifically, my neurologist said there are a lot of sympathetic nerves in the female cervix and that for someone with chronic neuropathic pelvic pain, simply crossing the cervical area to put the IUD in in or having something like the IUD put in that area that would stay there - could create additional or exacerbate existing sympathetically mediated pelvic pain syndromes.
This is something I am curious to get Dr Hibners input on.
Elizabeth
Menstrual Cycle
Re: Menstrual Cycle
I have terrible side affects from anything with hormones in it.
I also don't feel comfortable implanting any object into my lady parts.
Mostly I just fear the long-term affects of these treatments.
I also don't feel comfortable implanting any object into my lady parts.
Mostly I just fear the long-term affects of these treatments.
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
Re: Menstrual Cycle
Maybe so. There is a big difference in hormone level. There is also a pill called Micronor which has nothing but progesterone in it and might decrease bleeding as well. Definitely look into some options if you're still interested.pomegranate wrote:Faith wrote:The birth control pill gave me vaginal dryness, which exacerbated my vulvodynia. It did alleviate my cramps and other menstrual pain. I often felt that the pill de-estrogenized me, in a sense.
Perhaps the mini-pill is a better option for people like me? I'm not sure.
Lauren
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: Menstrual Cycle
Maybe for some it would be worth having it placed, and getting it removed if it doesn't work out; I only had cramping during insertion and for a little while afterwards. Of course some may not want to risk it at all. I just wanted to report my excellent experience with it in case it's a good, non-surgical way to stop the monthly pain of the menstrual cycle. I had my doubts about an IUD but I really love its convenience.elizabeth.w wrote:With respect to the IUD - my neurologist and gynecologist were not in favor of it for me. Specifically, my neurologist said there are a lot of sympathetic nerves in the female cervix and that for someone with chronic neuropathic pelvic pain, simply crossing the cervical area to put the IUD in in or having something like the IUD put in that area that would stay there - could create additional or exacerbate existing sympathetically mediated pelvic pain syndromes.
This is something I am curious to get Dr Hibners input on.
Elizabeth
I'm not sure if NorPlant is still on the market or if it suppresses bleeding; that would have the benefit of not being in the pelvis.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: Menstrual Cycle
Why can't there just be a male birth control pill? I'm sick of us having to deal with everything!!!
Right? Can I get an AMEN!?
Right? Can I get an AMEN!?
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Re: Menstrual Cycle
Well...the thinking was always that it's easier to control one egg per month than a bajillion sperm.A's Mommy wrote:Why can't there just be a male birth control pill? I'm sick of us having to deal with everything!!!
Right? Can I get an AMEN!?
![Laughing :lol:](./images/smilies/icon_lol.gif)
![Shocked :shock:](./images/smilies/icon_eek.gif)
![Very Happy :D](./images/smilies/icon_e_biggrin.gif)
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: Menstrual Cycle
I had to go on BC pills to try to control heavy bleeding. I had thickened endometrium with bleeding so heavy I had to get an iron transfusion in a chemo unit. They did a scope, D&C and endometrial ablation which was supposed to stop my bleeding, it slowed it but not enough. Since going on the BC pills my back pain is excruciating with cycling and I cycle every two weeks. The bleeding is sparse now but the bloating, back pain, sore boobs, severe cramping etc continues..this is why I think I am going to have to have the hysterectomy. I am petrified it will make the PN worse. I tried that IUD and it did good a brief while, then became partially dislodged, daily bleeding, removed it and had SEVERE bleeding as in clots bigger than my palm, flooding, unable to even leave the toilet bleeding. Had to go on hormonal therapy to stop that bleeding (waited six weeks first to see if it would subside but it didnt) I am glad yours is working for you, I know several women who swear by them! I hope if you ever have to get it out it doesnt do what mine did. I think I am just wierd though...lol...I have several congenital defects, just wasnt put together quite right. Katherine
Congenital Tethered Cord Syndrome-released 2000, Horseback fall fx'ing Sacrum & Coccyx (forward 90degrees) 2005. 4 years of severe pain which was finally self-dx'd as PNE (thanks to relentless internet research) and confirmed by Dr. Shobeiri, OU Med. PNLT's, PNB's x 3, Bilat TG done July 2010 revealing much nerve damage and atrophy. Good pain relief initially, increased pain at 3-4 months but remains below 7 unless I overdo, daVinci hyst 5 months after PN surgery with no increased PN pain
Re: Menstrual Cycle
oh also have fibroids and bilat ovarian cysts...
Congenital Tethered Cord Syndrome-released 2000, Horseback fall fx'ing Sacrum & Coccyx (forward 90degrees) 2005. 4 years of severe pain which was finally self-dx'd as PNE (thanks to relentless internet research) and confirmed by Dr. Shobeiri, OU Med. PNLT's, PNB's x 3, Bilat TG done July 2010 revealing much nerve damage and atrophy. Good pain relief initially, increased pain at 3-4 months but remains below 7 unless I overdo, daVinci hyst 5 months after PN surgery with no increased PN pain
Re: Menstrual Cycle
Oh, you poor thing, Katherine! Difficult enough with a broken coccyx, PNE, recovering from surgery, etc ...
I also had a history of really, really bad periods with the clots the size of my fist, changing tampons & maxipads every hour on the hour, the cramps that took my breath away. My PN started with uterine fibroids and the bilateral ovarian cysts. My uterus was also severely retroverted, detaching and laying against my large intestine. Within a one weeks time, I went from having a completely flat belly to my body mimicking a 6 month pregnancy. The pain and pressure was devastating! To this day, I'm shocked my insides didn't come flying out at warp speed!
I had the hysterectomy about 6 weeks later but the damage was already done. I can only guess that the fibroids and cysts aren't helping your comfort level, any. I also understand your reluctance to take any hormones or meds. I have the same sensativity issues as you do. I can't even take prescription hormones! Needless to say, with my uterus and ovaries gone, I went right into full blown (surgical) menopause. No fun.
I take Chinese herbs for the menopause symptoms and they seem to be working better than any script I tried. I feel for you with the difficult decision you have to make about another surgery.
Love and hugs,
Karyn
I also had a history of really, really bad periods with the clots the size of my fist, changing tampons & maxipads every hour on the hour, the cramps that took my breath away. My PN started with uterine fibroids and the bilateral ovarian cysts. My uterus was also severely retroverted, detaching and laying against my large intestine. Within a one weeks time, I went from having a completely flat belly to my body mimicking a 6 month pregnancy. The pain and pressure was devastating! To this day, I'm shocked my insides didn't come flying out at warp speed!
![Laughing :lol:](./images/smilies/icon_lol.gif)
![Sad :(](./images/smilies/icon_e_sad.gif)
Love and hugs,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: Menstrual Cycle
Yikes, you've been through a lot! In your shoes I probably would have the hysterectomy as well. You've tried absolutely everything there is to avoid it...you need to get your life back.KMC wrote:I had to go on BC pills to try to control heavy bleeding. I had thickened endometrium with bleeding so heavy I had to get an iron transfusion in a chemo unit. They did a scope, D&C and endometrial ablation which was supposed to stop my bleeding, it slowed it but not enough. Since going on the BC pills my back pain is excruciating with cycling and I cycle every two weeks. The bleeding is sparse now but the bloating, back pain, sore boobs, severe cramping etc continues..this is why I think I am going to have to have the hysterectomy. I am petrified it will make the PN worse. I tried that IUD and it did good a brief while, then became partially dislodged, daily bleeding, removed it and had SEVERE bleeding as in clots bigger than my palm, flooding, unable to even leave the toilet bleeding. Had to go on hormonal therapy to stop that bleeding (waited six weeks first to see if it would subside but it didnt) I am glad yours is working for you, I know several women who swear by them! I hope if you ever have to get it out it doesnt do what mine did. I think I am just wierd though...lol...I have several congenital defects, just wasnt put together quite right. Katherine
Hugs,
C.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org