I am so happy to have found this commmunity. I feel as if I'm losing my sanity.
Six months ago I had a lymph node removed in my groin area for disection. That came out ok, no cancer..But I developed labia/vaginal lympedema which turned into Cellulitis. Horrible experience,finally got the Celuulitis under control but the lymphedema remains still..And for the first time in my life I have developed kidney stones,I have a terrible time passing them due to the swelling in my vaginal/urethra areas.
I have been under the care of a Lana physical therapist. She is wonderful. But due to the constant swelling in the area I have developed Prudendal Nerve problems,complicating things even more..I don't know where to turn or what to do. My doctors have pretty much just shut me down,even my long time Gyno won't address any of this.. I can't seem to make anyone understand the amount of pain I am constantly in. Can't sit,cant wear anything with a seam,almost can't tolerate panties. My life is not even worth living. I have totally lost hope.
I am a 39 year old female. Was very healthy up until this. Very active and athletic. It's gone.. Any advice, please please help me.
Thank you, GeeGee
Labia Lymphedema and Prudendal Nerve
Re: Labia Lymphedema and Prudendal Nerve
GeeGee, welcome to this board where there are alot of people who can offer great advice and technical knowledge on the Pudendnal Nerve issue. Please do not give up and develop a strategy to work your way through this. Work one day at a time and focus on how to work on your problem. Make some life style adjustments, get the right medicines and start looking for the right docs to work on your issues. But do not give up, that is the main thing to concentrate on. Helen and Violet are great in guiding new arrivals on the right path.
Jim
Jim
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Labia Lymphedema and Prudendal Nerve
Hi geegee, Welcome,
Glad you have found us too
Are you taking any medication at the moment for nerve issues ? a combination of anti seizure (gabapentin or lyrica) and anti depressant (cymbalta) can help, there are others cominations and the home pages will give a run down of what is available. It is all a bit of trial and error and also giving any med time to work to see if it can help.
Even though it is the combo of drugs that can work I would always advise staging their introduction as you can then determine any positive effects more methodically and stop a drug if no good pain reduction. Cymbalta and other antidepressants can take 2 weeks - 1 month to be effective.
I may be being over cautious here with the staged introduction but just as a cautionary note, any side effects are more easily recognised (obviously) and with drawl can be difficult if taken over some time so the sooner a drug is seen to be unsatisfactory the better. Many people have no problems and extremely good results with medication.
You are in the more unusual position where it seems that your lymphedema needs to be addressed to help stop the PN problem. Any drug prescription that can help you PN pain wise, will also help any nerve pain 'wind up' which can sometimes be problematic. The next thing to try would be PT but you already are doing that .
Other things that may help the PN. . . .not sitting as much as possible, seating adaptations (cushions, standing desks) pacing activities so the pain, usually less in morning doesn't escallate too much. Is this the same with you worse as the day goes on? ICE, always a favourite. The home pages have a wealth of good info btw.
I am in a similar situation with regard to my local Dr. and can appreciate the aspect of lost hope you mentioned. They are supposed to be the people we turn to for help with these matters. . .. nuff said!! Maybe you could take the list of symptoms (tick yours off on list) and the descriptions or scholarly papers (Dr Hibner's) to your's (primary Dr.? British so ours is GP, or general practitioner) I won't tell you what I call her
. Hopefully they will then get the gist of what this is all about and be more supportive. Just being pro-active always seems to give me a boost and restores some hope. Hope we can do the same for you.
Aww thanks JIM
Take care,
Helen
Glad you have found us too
Are you taking any medication at the moment for nerve issues ? a combination of anti seizure (gabapentin or lyrica) and anti depressant (cymbalta) can help, there are others cominations and the home pages will give a run down of what is available. It is all a bit of trial and error and also giving any med time to work to see if it can help.
Even though it is the combo of drugs that can work I would always advise staging their introduction as you can then determine any positive effects more methodically and stop a drug if no good pain reduction. Cymbalta and other antidepressants can take 2 weeks - 1 month to be effective.
I may be being over cautious here with the staged introduction but just as a cautionary note, any side effects are more easily recognised (obviously) and with drawl can be difficult if taken over some time so the sooner a drug is seen to be unsatisfactory the better. Many people have no problems and extremely good results with medication.
You are in the more unusual position where it seems that your lymphedema needs to be addressed to help stop the PN problem. Any drug prescription that can help you PN pain wise, will also help any nerve pain 'wind up' which can sometimes be problematic. The next thing to try would be PT but you already are doing that
.Other things that may help the PN. . . .not sitting as much as possible, seating adaptations (cushions, standing desks) pacing activities so the pain, usually less in morning doesn't escallate too much. Is this the same with you worse as the day goes on? ICE, always a favourite. The home pages have a wealth of good info btw.
I am in a similar situation with regard to my local Dr. and can appreciate the aspect of lost hope you mentioned. They are supposed to be the people we turn to for help with these matters. . .. nuff said!! Maybe you could take the list of symptoms (tick yours off on list) and the descriptions or scholarly papers (Dr Hibner's) to your's (primary Dr.? British so ours is GP, or general practitioner) I won't tell you what I call her
. Hopefully they will then get the gist of what this is all about and be more supportive. Just being pro-active always seems to give me a boost and restores some hope. Hope we can do the same for you.Aww thanks JIM
Take care,
Helen
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.
Re: Labia Lymphedema and Prudendal Nerve
Hi GeeGee,
I think one of your goals is to get the swelling/inflammation down and something that might possibly help is to try an old-fashioned treatment of alternating hot/cold sitz baths. After my surgery I set up two shallow tubs on crates in my bathtub, one hot and one cold, (you can get shallow plastic storage containers from Walmart) and I would sit in the hot one for 2 minutes, the cold for 30 seconds and alternate back and forth 4 times. ( I used a plastic ring to sit on!
) I tired to do this 4 times a day. You can add epsom salts to the warm one as they are very healing. This draws fresh blood and circulation to the area and carries toxins away. Always end with cold. You can even add a bit of ice to the water if you can tolerate it.
Sometimes naturopathic providers are better at helping you find ways to help the body heal itself than western medicine docs. You may want to try seeing an alternative medicine provider for more ideas on how to help your body heal itself. Once you get the swelling down then maybe you can focus on the pudendal nerve issues and what's going on there. In the meantime, Helen's suggestions for finding some meds to keep your pain at bay is a good idea.
Take care,
Violet
I think one of your goals is to get the swelling/inflammation down and something that might possibly help is to try an old-fashioned treatment of alternating hot/cold sitz baths. After my surgery I set up two shallow tubs on crates in my bathtub, one hot and one cold, (you can get shallow plastic storage containers from Walmart) and I would sit in the hot one for 2 minutes, the cold for 30 seconds and alternate back and forth 4 times. ( I used a plastic ring to sit on!
) I tired to do this 4 times a day. You can add epsom salts to the warm one as they are very healing. This draws fresh blood and circulation to the area and carries toxins away. Always end with cold. You can even add a bit of ice to the water if you can tolerate it. Sometimes naturopathic providers are better at helping you find ways to help the body heal itself than western medicine docs. You may want to try seeing an alternative medicine provider for more ideas on how to help your body heal itself. Once you get the swelling down then maybe you can focus on the pudendal nerve issues and what's going on there. In the meantime, Helen's suggestions for finding some meds to keep your pain at bay is a good idea.
Take care,
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.