Trying to stay positive when I dont "get" it

[QueenVic1952]

This pelvic floor tightness came out of nowhere several weeks ago. I never ever knew this existed. Now Im in on baclofen/valium suppositories, HRT therapy 3x a week. I go for hrs where I have no pain and then the spasms and throbbing begins. Is there anyone else going thru a similar situation? Im scared and need support. TYSM

[kalecolbe12]

Yes been going through it for 4 years ..... Much better now but it takes a lot of modalities to get to the point where you can live a pretty normal life again. I feel like I did pelvic floor therapy for a year which helped I did muscle relaxers which helped baclofen which it helped and I do the meditation stretching breathing exercises and I take as much stress out of my life as I can... last year although a lot better I was still having some issues and anxiety also so I went on Cymbalta low dose and between everything with the Cymbalta has been the cherry on the top that is helped me live a normal life again

[jr188]

Hi QueenVic,

I had pudendal neuralgia and a tight pelvic floor beginning again last August. It has taken me 10 months of Pelvic floor PT and training to use "tools in my toolbox" at home for me to get better. I still use a cushion from Cushion Your Assets. I also take Lyrica ( 300mg day) and Cymbalta ( 120mg) for the nerve pain. I have learned diaphramatic breathing to help calm the nervous system and pelvic floor. My PT has also taught me stretches, and then later, strengthening exercises for around the pelvis. This helps as the muscles of the pelvic floor are not recruited as much if the muscles around it are stronger and more stable. I do use Valium suppositories if I am going to be sitting longer, and they help tremendously.

Hopefully this helps!

[Desperateforrelief]

I have very tight pelvic floor muscles, pudendal neuralgia, and have used baclofen/diazepam/lidocaine suppositories for a number of years (since 2009). My pelvic floor was injured by transvaginal mesh. I could not tolerate Cymbalta, gabapentin, and other drugs. I tried them all. I did get help with botox shots, however, they are excruciating to get. I have been in PT for years. A knowledgeable PT can help and goes a long way towards getting you back to life. I have had interstims to the pudendal nerves, which helped dramatically for about 2 years, then fizzled out. I had 100% relief for a few months from radiofrequency ablation of my pudendal nerve. I am currently getting them every 6 months and I am more physically active now then I have been since this all started. I am currently trying a new therapy that's out. It's called Sola Therapy. It is too early to see if it will make a difference. It helps to have a good support network. And attitude also helps make a difference. Hot baths are therapeutic. For a long time I referred to my heating pad as "my best friend." Ice can also help. Recommended by one of my doctors, I used a condom filled with 50/50 water/rubbing alcohol (keeps the water from freezing). My husband was worried the condom would rupture so he had me double wrap them. They did help a lot, relieved pain for about 1/2 hour.

Hang in there and keep pushing for help, it can get better. My 60's are much better than any of my 50's.

[SouthernSally in reply to Desperateforrelief]

Has Sola Therapy made a difference?

[Desperateforrelief in reply to SouthernSally]

It is too early to tell. I think I'll have a better idea in a month or 2. I'm getting my last treatment today.

That said, the doctor says he can feel a big difference in the tightness of my pelvic floor muscles, that it just hasn't been felt by me yet. A 50% reduction in tightness. That still means I have tightness left. He thinks I'll begin feeling the difference in a month or so. I'll try to keep you posted. I have reduced my medications and that is a positive indicator.

Hang in there!

[SouthernSally in reply to Desperateforrelief]

That all sounds very promising. Good luck!

[SouthernSally in reply to Desperateforrelief]

What are your opinions on the Sola Therapy? I hope you feel better!

[Desperateforrelief in reply to SouthernSally]

I am getting off of my pain meds. It is amazing how much better I felt. I was able to ride home in our car for 11 hours with no pain med. This a first in the last 12 years! It is hard to believe a light source could do this (laser), also I had pulsed radiofrequency ablation of both pudendal nerves. Between these 2 therapies I'm doing much better.

I will say my neuroma is starting to bother me, but it's a 2. I can handle that.

[SouthernSally in reply to Desperateforrelief]

That's wonderful! I'm so happy for you? Did the Sola help the pudendal pain at all? Did you do the treatment over a few days or weeks? I know the standard protocol is over weeks but I would need to do it over days as the nearest practitioner is hours away. Also prior to the ablation how did they diagnose the pudendal nerve damage? I hope you don't mind the multiple questions. Thank you.

[Desperateforrelief in reply to SouthernSally]

I'm not sure the %. But between the RFA and sola therapy my pudendal pain has cleared. I don't know for how long. According to my doctor you have to do all 9 treatments for the sola therapy. The pulsed radiofrequency ablation is once. The first time they did the nerve I was pain free 3 months. This last time he did both nerves, he said they get better results. My PN was diagnosed by the PN nerve test. They put steroids into the nerve. I had 100% relief for about an hour. I had 3 different nerve blocks (same procedure) to make sure it was the nerve. One lasted 4 hrs, but pain always came back. I also have obturator neuralgia, which is not bothering me either.

The nice thing about PN pulsed radiofrequency ablation is it isn't permanent. Neither is sola therapy. Nice non-surgical options. My doctor told us I was the most injured in his practice so he was anxious to see if this therapy could help me. It has. No long term data for me yet. He told me it lasts about 9 months.

[SouthernSally in reply to Desperateforrelief]

Thank you. Would it be OK if I DM you later? My pain seems similar and I've been trying to figure it out next steps. Thank you.

[Desperateforrelief in reply to SouthernSally]

Of course, I'd be happy to help in anyway I can.

[SouthernSally in reply to Desperateforrelief]

Thank you. I'll be in touch later.

[SouthernSally in reply to Desperateforrelief]

Did you get my note? Thanks.

[Madisonjane]

Hello queen how are you iam Laurie from Michigan

[QueenVic1952 in reply to Madisonjane]

HI!

[Madisonjane in reply to QueenVic1952]

Hello queen

[Madisonjane]

How long have you had MS for if you don't mind me asking