...need advice and ideas for self help before I just give up!

[Hecky]

Hi folks, need help as I'm not sure if I have PN damage but seems the only logical answer. I have a terrible searing pain in the left side of my labia that can extend into my what I can only describe as my rectum! This only happens during arousal (sorry if TMI) and can build to an alomost impossible cramp like pain...penetration is difficult as are smears and any gynae examination!

My Gynae consultant recommended an abdominal hysterectomy which I had 2 weeks ago also done for heavy bleeding and adhesions caused by previous gynae operations...they also removed the cervix...my hubby is a darling and so understanding, I honestly thought this would relieve my symptoms, however I am still having a "toothache" pain in my left buttock down to my knee and ankle...and on just slight arousal I am still feeling the beginnings of the searing pain on the left side of the labia! going into the vagina & rectum!! I'm devestated if I have gone through surgery (which I admit was also for other horrid symptoms) and I am now constantly worrying that intercourse will still be painful.

I was going to purchase one of those kegal8 machines to help the pelvic floor strenghten,

would this help me? Is there anything else I can do to help me and my hubby get back to a normal healthy relationship as I dont think I can cope if this were never to happen! A family member is an acupuncture practitioner and did help with the knee/ankle pain, also said she can undertake genital acupuncture but I'm obviously wary, has anyone had experience of this?

I am honestly desperate for anything that will stop this pain as my consutant just said (after quite a painful, uncomfortable examaination) and I quote "I've no idea what thats about!"

Sorry for the long post but I've reached desperation point!

[PPSN_JudyB Pelvic Pain Support Netwo]

Have you seen someone who specializes in vulval pain ? where are you based ?

[Hecky]

Hi, no I haven't, I'm in the Midlands but prepared to travel. My GP previously prescribed some cream to apply directly into the vagina...it was steroid based but on my investigations I was told it was not a good thing so never tried it.

[PPSN_JudyB Pelvic Pain Support Netwo]

There's Birmingham Heartlands and Nottingham. Also London of course if you're willing to travel. You can ask Jacquie B on here about non steroid cream. It may be specially made.

[charlie83]

Dear Hecky

I just spotted this question after you kindly responded to mine too!

Sorry to hear about this, it sounds awful. I do know that there are pain "meridiens", could this be a nerve pain which is a result of referred pain from somewhere else?

Not meaning to be graphic but does the vaginal outer pain feel similar to the buttock pain or is it a different sort of pain? is there soreness on the outside, or redness? if so it's more likely to be something like vulvodynia maybe?

it sounds like a nerve thing, perhaps?

i know that my pain can go down the inside of my thighs right down to my calf muscles, and i think there is a connection between the pain you're describing and perhaps a pelvic floor issue? it could be that your pelvic floor muscles are too tense??

i personally tried acupuncture for endometriosis pain and referred pain and found it extremely powerful, sometimes a bit too much, but as long as the acupuncturist doesn't put the needles directly in to the pain area, and puts them in other places such as the forehead, many people find great relief and that it's a way to really relax. I think it's worth a try if you know a good acupuncturist!

i really hope that this helps even a but, sorry it's a bit of a messy reply! im a mess atm!

Sending lots of hugs

xx

[Hecky]

...thank you, I'll investigate my options...also got a trigger point therapy book and now I've found this site and loads of information re PN, I am also going to start exploring a self help option too...I'll report back...again thank you

[Hecky]

...ohhh Charlie you nipped in there! Thank you, I'm determined to to try any self help first before submitting my body to further medical invasion/medication and thats me being a Nurse! Trying the trigger point massage first see how it goes and continue with acupuncure for the leg and ankle pain...the pain in my buttock, leg is a dull ache can only describe it as "toothache" but on arousal its a stabbing searing pain...I'll keep you updated on my progress and please let me know how your getting on too...x

[charlie83 in reply to Hecky]

gentle massage can be extremely effective - i am actually trained in massage and wish i could massage myself but it just doesn't work! i think massage can be as effective as acupuncture too. I agree that more invasive things are putting your body through more trauma and sometimes can cause more probs than solutions. I find my hot water bottle the best painkiller in the world!

i hope it helps you. Feel free to message me anytime and yes please do keep me updated onhow you're doing

Wishing you lots of well-ness and hugs

xx

[Marion35]

Hecky. How are you today? I am commenting on this post because I am under Professor Leusley at Birmingham City Hospital who has been brilliant. He diagnosed PN and I have had one consultation with Pain management at that hospital as well as one nerve block. I hasten to add I have had no relief from the nerve block but it might be worth your while getting your GP to refer you to him.

[Hecky]

Hi, thanks for the replies ladies...I am back to the hospital for my post op check in 4 weeks and will be discussing my options re referral to City for a consultation (thank you Marion35)

I have also been reading up on trigger point therapy (following my research after my amazing enlightenment on PN on this site!)

...yesterday and today I have been "working" on my periformis muscle, some gentle massage and stretches...the periformis muscle is the largest and most important of 6 short hip rotator muscles, they lie between the sacrum and the middle of the buttocks...this muscle allows the body to turn in the opposite direction (twisting) and, if over worked or damaged by truama (falling on your bum!), can set up a trigger point in the pirformis muscle...this in turn can cause nerve and blood vesssel entrapment...the sacral nerves (S2,S3 and S4) can become entraped as the muscle, which can become shortened, grows in diameter and can compress these nerves...I am amazed as this may be the answer to my numbness in my left heel too...WOW!

Anyway!!! As my book has advised I did a gentle stretch and used a tennis ball to massage the left buttock I have really really felt a 'pull' or a 'tug' in my lower back, rectum and the left side of my genitals!!! Amazing!!! So I'm cautiously optomistic and will continue with this course of action and report back...

I will just add...please do your own research on trigger point therapy (I really did my homework first) as this is my first lince choice of self treatment and I'm am in no way telling everyone to rush home and try it...be kind to yourselves and bodies...

[charlie83 in reply to Hecky]

Hi Hecky,

how are you doing?

I just had a thoroughly depressing appointment with an unhelpful urogynaecologist and have now decided that i have to do lots more self-help/research or i will not get through this without going insane!

could you possibly send me the name of the book you are using which is helping you so much? I could really do with a good one, i have looked at various but haven't a clue of what will be good, so if you could let me know the title and author i would be so appreciative!!

I know from experience it's tough to self-help, but on the upside, we know our bodies better than any doctor can as we feel the pain and the referred pain, and it's often hard to describe it in a way that the medical profession understands. Pain is a difficult thing to describe at the best of times!

I think with things like this which affect every aspect of our lives, it helps to feel in control of something, even if that is just trying to get a handle on what is happening and the connection between different symptoms.

I certainly feel less crap when i go onto this site, it helps just to hear from people who really "get" it!!!

I sincerely hope that you're feeling better, and sending lots of hugs and best wishes

Charlie

x

[teachersmate]

Hi HeckyI've just come across this old post and suffering from pn myself was very interested.

Can you tell me what books you read about trigger point massage. I would love to give this a try as I think it would help me.

I totally agree with your ethos of researching on yourself. Dr,s don't seem to be very clued up about it. My pt knows more.

How are you now, did you find something that helped

[Debra13 in reply to teachersmate]

Hello my name is Debbie. I’ve been suffering with Pudendal neuralgia and interstitial cystitis for almost 19 years now. If you really want to learn how to do good internal trigger points you can actually go to a pelvic floor physical therapist. They will teach you how to do internal trigger point release. Also I think YouTube will have some of the outside ones you should be doing also. I hope that helps. If I can help you with anything else don’t hesitate to ask. Hope you get some relief. I get nerve blocks and RHEO and Botox injections every 3 months. The blocks I do twice a month. I also do a bladder installation every 3 months. I’m also on a lot of medicine and now I’m going for a permanent sacral neuromuscular Stimulater in January. Let me know if you have you have any questions. You can private message me. Hope I helped you. Debbie.

[Imakelace]

unfortunately I have not been able to have sex with my very understanding husband for 20 years. Very frustrating for me but my vagina has adhesions from top to bottom and a Gyne surgeon called it a car crash