Edit: I WAS CURED AFTER 22 YEARS! I had a vestibulectomy Dec. 2016. The recovery was easier for me than having sex ever was. It took about 5 weeks. I have included my recovery photos. Look for the blogpost "I'm Cured!" and "My Vestibulectomy".

I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. My hope is that my obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."

Pudendalhope.info: Non-Medication Treatment of Pain

I pulled this off the web written by a pelvic pain patient about lifestyle changes without using medication.

[A note on Tramadol. It looks like it has some drug interactions, including SSRIs.]

Non-Medication Treatment of Pain That Has Helped Me

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Non-Medication Treatment of Pain That Has Helped Me

by shawnmellis » Sat Dec 03, 2011 2:47 pm
Hi everyone, There are medications such as Tramadol, Lyrica, etc that are
great for extreme pain and Valium does help relax the pelvic muscles and can reduce some of your pain. 
Maybe more important than Medication for pain, is learning how to heal your body, and lessen your 
pain with natural, and
non-medication management. As far as non-medication management, here are the things that work for
me and helped my pain level to go from constant all day pain, to pain only while sitting, and also lower
level of pain while sitting in a little over 1 year. I will probably still need surgery one day soon, and
I'm trying to get the money for it now, but until then this is what helped and still helps me.

1. Time (It takes months for nerves to heal, sometimes up to a year, while practicing hyperavoidance
and everything below)
2. Avoid sitting upright or any position that increases you pain. For me a Layzy Boy Chair REALLY
helped me because I can recline back in it so that there is less pressure on the perineum. 
Every day, I am either standing, walking, or reclining back in the Lazy Boy Chair. It is really soft 
on the perineum and when you recline back, there is less pressure on your perineum. This same Lazy Boy
chair also helped me totally recover from a back nerve injury that lasted a few years.
3. Avoid sleeping in any position that makes your pain worse. You may have to experiment with side,
side with pillow between legs ,back etc. For me, sleeping only on my back has helped me, but
everybody is different
4. Take a warm bath twice a day (10 to 15 minutes each time) This alone loosens the muscles and
fascia surrounding your nerves to help with the nerve compression and also heat helps take away nerve
pain. There were times when my pain level was an 8 and I took a warm bath for 15 minutes and it went
down to 2, just from this alone. If you can't take a bath, try a heating pad, or warm shower.
5. For extreme pain, or flares you can also apply ice to your worst pain areas for 10 minutes for 2 to 3
times a day. I use a zip lock bag fill it with a little water, and add a few ice cubes. Make sure it gets to
where your worst nerve pain site is. They say not to apply it directly to the skin, but I will not lie, I have
applied it to myskin this way for at least a few minutes at a time and it helped me. Just had to be sure
I did not give myself frostbite or anything :)
6. Take anti-inflammatory Ibuprofen if doctor okays it, along with other meds until bad pain flare gets
7. Listen to relaxing music while taking baths or laying down
8. Do not do too much or overdo physical activity if you are in extreme pain or other exercise or activity
like lifting too much that may reinjure you while your body heals. If you are doing laundry every day
and you feel much worse by the end of the day, find somebody to help you with it. There are certain
physical activities that may even seem small to us which can make your pain continue and healing
delay, so if something makes your pain worse , please ask someone for help and don't be ashamed
about asking for help. We have all needed help with doing certain activities from this.
9. If you are able to walk without too much pain, it is good to walk some because it gets blood flowing
to the nerves, helps relax the fascia and muscles surrounding the nerves, and decreases stress which
makes the pain worse
10 Try to avoid stress as much as possible because it can make your pain worse, due to tightening of
your pelvic floor muscles and effect on how body handles pain
11. Eat healthy foods with antioxidants, and all the vitamins especially Vitamin D, C, B. Maybe even
take a multivitamin each day
12. Do whatever you have to do to get a good night's sleep because it helps with pain reduction,
 stress, anxiety, immune system, healing, etc. If you are not able to sleep well after trying everything
talk to your doctor about it and they may be able to prescribe a sleep medication temporarily or give
other advice on it.
13. Whenever you have to sit upright in a painful position, which for me is 2 or 4 times a week, I sit on
an actual pillow that you sleep with. It has worked far better than any other donut or other cushion on
the market because it reaches my entire buttocks and perineum area and is soft, and just more
 effective overall. I even take it with me to restaurants, the car (my wife usually drives me) and I sit on
my pillow while usually propping one foot up on the dashboard or both, etc. Whatever works, is
my motto? Right? Don't knock it till you try it :)
14. Myofascial release and other light PT may help some (massaging deeply and pressing on your
muscles with finger tips and thumbs where pain is and skinrolling, and careful, selective, light
occasional and appropriate stretches done by a trained PT, and only ones that do not worsen your
pain a lot may help. I have tried both of these occasionally at home. I really feel though, that I have
gotten my pain level down without PT, and just by doing everything listed here, including occasional
light walking, and I know some people who have gotten worsening of pain or flares, from having PT
done incorrectly . In my opinion, strengthening exercises (especially weights and Kegal exercises)
should be avoided and especially during your worst painful period because they will cause the already
tense, tight pelvic floor muscles to become tighter and more inflammation and pain. You want to relax
your muscles as much as possible and do some light walking if possible, and maybe occasional light
stretching done correctly by a trained PT. If your pain jumps from any PT or exercise, avoid it for awhile.
15. Avoid STAIRS and walking up hills like the PLAGUE, when you are in bad pain flares. This truly
made mine worse
16. I am lucky to work from home, but many are not with this horrible pain. Your health is your wealth.
If I did not work from home, I would have had to quit my job months ago and go on disability just like
most with PNE do. If sitting all day is making your pain worse and not allowing your body to heal but
just continuously have inflammation around your nerve, your body can not get a chance to heal on its
own. This is especially important for those who have had a severe pain of 8 out of 10 while having to
sit at a job each day. I know it is not easy at all in this economy, but if you are not able to find a job
that you can stand at all day and not have to drive long distance back and forth from work and it makes
your pain worse, if you are able to somehow then you may have to go on disability like a lot with PNE
do. People with severe back pain problems also have to go on disability at least temporarily from their
medical problem also. Back nerve pain is the most common cause of disability.
17. Keep thinking positive thoughts, There's Always Hope, I will get better one day, I'm not going to
give up, I"m going to Fight PNE!, etc.
18. I did all of this for a little over 1 year, and now I am totally off of Tramadol pain medication and the
only thing I take is Valium for occasional urinary related pain problems. I still have pain when I sit, but
I just avoid it as much as possible (hyperavoidance), and I no longer have a constant pain. I am able to
now take Ibuprofen or Tylenol or both for pain. I found out that Opiates including Tramadol can lower
men and women's Testosterone causing fatigue, weakness, low immune system and other problems,
so I strongly advocate people to try to do everything they can possibly do (non medication) wise along
with the medication until the pain level decreases and are able to get off some of these pain
medications one day through doctor's supervision because many of these pain medications, especially
Opiates, have hidden side effects if taken long term especially.
Last edited by shawnmellis on Sat Dec 03, 2011 11:31 pm, edited 4 times in total.
Bringing Help Awareness Education to Patients & Doctors about PNE through Videos at
http://www.YouTube.com/PudendalNerve & PudendalHope.com Please tell Dr. Oz to cover topic of PNE by
going to http://www.doctoroz.com/contact Started 1/2010. Initial urinary tract infection in 1/2010. Medication:
Diazepam, Tramadol. 4 nerve blocks. physical reinjury 8/2010. 7/2011 Potter MRI Varices dorsal branch 8/23/11
Diagnosis Entrapment of Dorsal Branch Dr. Lee Dellon There's Always Hope!
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Posts: 227
Joined: Sat Dec 04, 2010 8:42 pm
Location: Concord, NC USA

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