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Pelvic floor spasms and pudendal neuralgia.

lala93 profile image
25 Replies

Hi everyone,

I have been diagnosed with Pelvic Floor Hypteronic (tight pelvic floor with spasms) and pudendal neuralgia.

My doctor has suggested pelvic floor physiotherapy and if that is unsuccessful a botox injection into my pelvis and a nerve block in the PN nerve.

Have only been going to the physio once and she suggested I do these stretching exercises found on the pelvic pain org.com.

So far with doing the stretches no pain in vagina but irritated bum pain.

Been looking into nerve blocks and botox injections, my doctor seems to think they will help but all of the information from posts I have read say they can make it worse.

Need a little bit of reassurance. Is there anyone out there with the same pelvis floor spams issues that have benefited from these forms of treatment.

Thankyou. xx

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lala93
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25 Replies
T8t8 profile image
T8t8

Hi, I have a similar issue of hypertonus and nerve pain but without spasms. I see Maria Elliott, women's health physio in London. This expensive but worth it. We found that at first the stretching exercises we're too much and aggravated things. The thing that helped the most was the internal trigger point release,and now some months along the line I am able to tolerate the stretching. Not all physios are trained in internal trigger point but I'd recommend finding one who is.

lala93 profile image
lala93 in reply to T8t8

Hi T8t8,

Thanks for the reply! Yeah I feel as though the stretches can be a bit full on, not getting normal pain in the vagina but a different sensation in the bum.

I will have to see if my physio does trigger point release.

Hopefully they do, thanks xx

chillijava profile image
chillijava in reply to T8t8

hi

please could you remember not to mention doctors or any other health professionals names on the forum, people can always pm you to get these details if they need them

thanks for reading this

andreaxxx

NuniamI profile image
NuniamI in reply to chillijava

So sorry I didn't read this and wrote my Dr's name. I'm so new to technology I will not do this again.

chillijava profile image
chillijava in reply to NuniamI

its alright its easy yo do

andreax

Krisssy profile image
Krisssy

I have the exact same thing. Last time I had this the Botox and PT worked. Now it's back and going to try those things again. I only do external PT. Internal PT made it worse.

Chica1943 profile image
Chica1943

I had all you mentioned. None helped but we are all different

Chica1943 profile image
Chica1943

I had both blocks and Botox and neither helped. I asked my doctor to prescribe a compounded vaginal suppository. One had lidocaine and bachlofen and I've also had some that was just bachlofen .... which is a muscle relaxant. I just have to ask you.... do you have a mesh for prolapse bladder or uterine? If yes? Please get back to me. That being said, I also experience vaginal pain from time to time. It is excruciating

lala93 profile image
lala93

Thanks for the reply! A lot of people have said these methods didn't help, did they make things worse for you? If my physio is unsuccessful my doctor has suggested these. I'm sceptical to try them if they may make the pain worse as I have heard from two people who have had the Botox have said so. I have had neither of these, I've never had a surgery of any type:)

Susan1-2 profile image
Susan1-2

Try transabdominal/ kegal exercise. Look for a chiropractor/Art doctor. See if that helps before you get botox

Ali_rivers profile image
Ali_rivers

I've had the nerve blocks done every 8-10 weeks for the past 2 years. They've helped me tremendously! I couldn't function without them. I'm going to try the Botox injections next in addition to nerve blocks as I've heard that can calm the pelvic floor spasms. I had a bladder lift with mesh, an ablation and 3 kids. The dr seems to think it could have been any of the events that's caused the nerve damage. I would recommend giving them a try as I seriously couldn't live without them! Good luck!

lala93 profile image
lala93 in reply to Ali_rivers

Hey Ali. Thanks for the comment. Yes my doctor recommended getting that done also but to try physio first. Which is what I'm doing. I have heard that the Botox may or may not help but I guess you have the gamble of that with everything! Because your body has corresponded well with the blocks it should help you too! My doctor said that it's very common and that he has helped a lot of people with the Botox injections and nerve block combo so fingers crossed! Nice to know there is options available if I need them. Thanks for your help!

NuniamI profile image
NuniamI

I've been treated at Brig Womens, Chestnut Hill, Boston, Dr. Asia. Botox did not work for me, but nerve blocks were VERY successful approx 4-6 mths of relief! She's awesome, so very knowledgeable about this horrific condition that's so hard & embarassing to explain. My heart/prayers go out to you. Valium, used as a suppository, is very helpful while waiting for trmt. I use 10mg tablet as the compounded suppositories r extremely expensive. This is me right now...On my couch makibg a boiled dinner cuz it can just sit on the stove, heating pad on stomach, legs up under pillows to calm spasms. Small ice pack wrapped in clean white, I prefer cotton sock, helps w/nerve pain in vagina. I also do lamaz breathing. Sounds silly, but truly all this home ready stuff works! Not for long periods of time, but gives me some relief. GOOD decaf tea w/fresh mint, it's just a weed & grows in my backyard I find this little treat is very soothing for body & mind. Fortunately, my doctors also prescribe a muscle relaxer. I hope that, U too, can find sum escape from this. Oohhh sitting in a hot tub is also helpful. I've only gotten to do this once, for this reason, but wow was it nice! May God's love enfold U, His strength sustain U , His Grace/mercy comfort U.

lala93 profile image
lala93 in reply to NuniamI

Hi Nuniaml, thanks for your comment. Good to hear that nerve blocks have helped you. I definitely agree that Home remedies/ life style changes help drastically! Thankyou for your tips! I will definitely ask about a muscle relaxer from my doctor and I don’t have a bath but showers/ heat is exstremly relaxing!

NuniamI profile image
NuniamI in reply to lala93

Thx for responding. This is such a difficult experience to go thru. Not that I should expect others to understand, but it's helpful to be able to talk w/women who do! Today is a much better day, just some tightness going on. We have our 8 yr. Granddaughter spending the nite, hoping I continue to either get even better or at least stay as I am.

lala93 profile image
lala93 in reply to NuniamI

Hi, yes of course it is a difficult thing to go through when no one has any idea of what it could be like! Oh nice hope your tightness relaxed! I’m definitely going to look into some muscle relaxers as well :)

NuniamI profile image
NuniamI

As an FYI, I've been dealing w/ this for approx 12 yrs. Medicine has come a VERY long way in acknowledging, diagnosing & treating these conditions! My 1st injections were just arcaic!!!

lala93 profile image
lala93 in reply to NuniamI

Yes no doubt medicine would have changed a lot since then. Hopefully for us it will keep getting better!!

Lily21 profile image
Lily21

If you can afford it, I would recommend Helen Keeble, a physio in London. She has treated me, and I am ca 85% better, going for 100% soon. She is amazing both professionally and personally.

lala93 profile image
lala93 in reply to Lily21

Thanks Lily21. Unfortunately I am in Brisbane, Australia. If you don’t mind me asking, what kind of approaches have you been doing? Do you have PN and a tight pelvis also?

in reply to Lily21

Oh my goodness that’s an incredible improvement. May I ask what your symptoms are/were? Are you still ok?

Jenuk32 profile image
Jenuk32 in reply to Lily21

How much does she cost per session and does she offer a scan first? Can you be referred by the NHS? Thanks

jenmal profile image
jenmal

I would recommend Pelvic Pain clinic in Sydney, Angela James, she specialises in PN and pelvic dysfunctions.. ppl from Brisbane come to see her and she does a two week intense app course for those coming interstate

pizon profile image
pizon

I had pelvic floor muscle spasms and p/n (however the p/n) was not diagnosed until after I stared with my p/t (she though I had p/n but couldn't find a dr. to diagnose it for a time after)...the p/t help very much as far the stretching exersizes I do a yoga for pelvic pain and it helps me as well best of luck to you

pizon profile image
pizon

I never had a nerve block for the pn..however I had one for ingual nerve pain and will not have another nerve block again when it wore off it was much worse (the pain) then before the block...I am currently doing accu pressure and it has also helped again good luck

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