Pelvic floor PT

[Icybonz12]

After PT I feel like I have been kicked down there everytime. I have been going at it now for 3 months and am so tired of being in pain. It hurts to contract my pelvic floor like a kegal and my therapist is working on the pubococcygeal muscle which is the only one that isnt behaving. The only thing that helps are warm baths. How long will I have to go through this therapy until I start to feel better?? Is 3 months still early in the game. I am so tired of of being in pain 24 hours a day.

[edythe]

Is your PT an expert in treating pelvic pain? Kegel exercises are usually not helpful for those suffering from pelvic pain. We need to relax the muscles !

And how often are you having PT? Do you decide how often to have a session? Our bodies need time to integrate the changes and how Long this takes is different for each individual. No two people are alike in this respect - this is not my wisdom but that of thePTs and doctors who have been treating me for 2+ years. Gradually the pain is decreasing.

I still use lots of warmth - hot-water bottle, electric blanket in winter and other things too. Is this of any help?

[Edenborough in reply to edythe]

Hi, i am seeing a women's PT at Nottingham University Hospital after 4 years of pelvic pain. I had bilateral pudendal and cluneal decompression surgery in 2012 in France. My PT is very patient with me and so far I have only been given simple exercises like buttock clenching as most of my muscles are shot after not using them for such a long time. I am frightened of progressing to pelvic floor treatment as I have read so many horror stories on here and I know that just getting to the pelvic floor muscles is going to be soòooo! PainfuL How was it for you at the beginning of your treatment as you have found it helpful? How often have you had this treatment? What was your initial problem?

Great to hear that you are gradually getting better, regards Marion

[edythe in reply to Edenborough]

Hi Marion,

You have obviously had a much worse time and much more pain than I have had; there is no obvious cause for my pelvic pain - just started out of the blue - no endo, previous surgery, PNE or whatever. I managed to find a PT about 70 km from where I live Iin Germany) to whom I went about once every four weeks at the beginning and also got some help from osteopathy. I also consulted Maria Elliott (Simply Women's Health in London) once when I was over for a stay.

Since March I have been having sessions once a week - different PT- and over these last six months I have not had so many flare-ups and the pain is more manageable. To begin with the muscles were so tense and the fascia so felted up that it was very difficult to get any relaxation. The treatment itself is not so painful although the PT can always find new trigger points. So it definitely a case of a gradual development for which one needs a good portion of patience. What has not yet really improved is my ability to sit without pain for more than short periods.

Are you pleased with the results of the decompression surgery?

[icrelief in reply to edythe]

Maria Elliott is an excellent PT!

[Edenborough in reply to edythe]

Sorry it has taken so long to reply. Yes there was definitely an improvement in some areas but not ability to sit. My case was always complex as walking is a big trigger for my pain. I think I have 2 separate problems. 6 months of gentle physio exercises has strengthened my leg muscles and slow walking with sticks is much improved. Last week I let my PT address the pelvic floor for the first time. Very painful examination and few days of increased pain afterwards. I think things are starting to settle again so I am supposed to practice contracting and releasing pelvic floor muscles. As she said that I can contract but not really release these muscles I am not keen to try.

No gain without pain or just try to minimise pain levels?

[edythe in reply to Edenborough]

I'm glad to hear that physio has helped with your walking. It is probably to be expected that the first treatments of the pelvic floor are painful - the muscles are often very tense. That's one of the reasons why you can't easily release them. Once some of the trigger Points have been released that will -hopefully- gradually become easier. It will often feel sore after the treatment but this feeling shouldn't last too long. If it does, I think it would be a good idea to reduce the length and intensity of each treatment.

That would be something to work out with the PT herself as each person is different.

Fortunately I have no difficulties with walking - this helps to loosen up the muscles.

To begin with the pelvic floor treatment was very painful but gradually things improved. The pain levels in general are now (after 2 years) considerably improved. Another thing that helped was Vagifem, which I use regularly and which the PT suggested right from the beginning. I don't know if that might help in your case.

All the best and may you make good progress.

[Edenborough in reply to edythe]

Thanks. I just looked up vagifem to see exactly what it is. It was too painful to go anywhere near my vagina but I have been using oestrogen cream for months now and it helps with dryness and I think has improved the area around the entrance so that my PT was able to examine me. Guess we do not always realise where the improvements are taking place if they do not actually reduce the pain levels.

I shall definitely keep going to see my PT as I have a lot of confidence in her.

Kind regards, Marion

[Icybonz12 in reply to Edenborough]

Thank you for your reply. I had a vaginal hysterectomy due to high risk hpv. No pain or problems prior to surgery. Ugh. PT was painful yet tolerable in the beginning. It actually felt like a good hurt at times if that makes sense like receiving a back massage, the muscles are so tense it feels like a release. I am so sorry you are going thru this. I found its very helpful so the hard days just know it will be worth it. A slow process. I have been going to PT now for 3 months.

[Icybonz12 in reply to edythe]

Thank you so much. I should of clarified that they arent true kegals, i am contracting and relaxing 50% to retrain my muscles. Even that aggravates it. Walking, bending over, just constant tightness like my privates are in a vice. I love my PT. I go once a week and asked to go more but she said it would be too much. Warm baths are a God send. What caused your pelvic pain?

[Hidden in reply to edythe]

I agree with what Edythe said! I just left a (longer) comment saying pretty much the same thing. My PT does have me kegel but then she has me totally let go and relax the whole pelvis. I hope this PT knows to do that... this whole thing really is awful. I can not believe how many of us are suffering from this One year ago I was fine.

[Rosepetal60]

I had 13 weekly treatments of trigger point therapy with a gap of 4 weeks at one time. It was never mentioned how long I should carry on for. I did ask but was told some people gave up and some carried on. There was no time scale. So I just carried on in the hope of it working for me. Unfortunately not only did it not work, it gave me more pain in the nerves at either side of stomach and some digestive symptoms which I am still suffering with today 5 months after I stopped going. As well as the Pudendal nerve pain which I have had for about 17 years.

The physiotherapist I had was trained in "this treatment" but in hindsight I should have stopped when other symptoms started to appear.

[Pepper1977]

My nerve surgeon told me after 3 months it's useless. I stopped and started to feel better on my own but everyone is different. Are you using vaginal suppositories?

[Icybonz12 in reply to Pepper1977]

I have tried vaginal valium up to 10 mgs. Doesnt help

[Pepper1977 in reply to Icybonz12]

Ask if you can have gabapentin and lidocaine added

[Icybonz12 in reply to Pepper1977]

Ok. I wonder what the cost would be for that. Ugh

[Pepper1977 in reply to Icybonz12]

It depends all pharmacy is different

[jquintile in reply to Icybonz12]

I pay about $40.+ for 30 suppositories and $30. for the vaginal Lidocaine compounded cream

[jquintile in reply to Icybonz12]

My urogynecologist gave me scripts for the valium suppositories. They are compounded by a company in Pennsburg, Pa I also get a lidocaine cream from them....with an olive oil base (I was allergic to their regular base)....and my neurologist gave me a script for gabapentin. With Medicare and secondary insurance the gabapentin was about $6. The suppositories and valium cream each cost $30. for a month's supply. I don't know where you live.....but this compounding pharmacy is very good......

[jquintile in reply to Icybonz12]

The valium suppositories helped me some but the base product in the suppositories seems to irritate my skin....so now, they are using coca butter as a base. All this gets very expensive because it's not covered by any insurance. I also went to 2 a day, which my Urogynecologist approved.....

[Hidden]

We can't get vaginal suppositories in the UK. Not on the NHS at least, not sure about privately.

Has anyone in UK been prescribed them? Would be grateful of any info.

Take care.

[icrelief]

You should not be in pain after each session. Ask your PT to ease off the pressure being applied. Some PT's apply enough pressure to get trigger point to give, but then the trigger point comes back with a vengeance causing more pain.

I also suggest that you apply ice after each session. This will numb the nerve endings. Take a long, thin ice pack to your PT sessions, wrap in a piece of cut off t-shirt, pin it to your panties and wear it home.

Although a warm bath may feel relaxing and alleviate the pain during the bath, it energizes the nerve endings. This causes the nerve endings to send more pain messages to your brain. Stop using hot water bottles and warm/hot baths or if you feel it helps, always follow by applying ice.

PT sessions should NOT cause you so much pain!

[Pinky2233]

Hang in there. It can be a long process but most likely you are in the right and best hands with the Pelvic PT's, in my opinion. Consulting additional pelvic PT's and investing in several months at a time until you are finding progress. Once you find progress stay the course.

Magnesium is a good muscle relaxer. Also, Try crushing a 1/2 a valium and mixing with olive oil. Place directly inside to ease the pain when you need relief and it has been too much perhaps to sleep. A hot tub can be life changing at a gym. Some gyms even have salt water hot tubs. Learn how to release pelvic tension yourself with your pt. They should be able to show you how to work on muscle tension if that is the cause.

I am a big fan of acupuncture. Only some needles (meridians) correlate to certain pelvic pain. Some needles get directly to the muscles of tension. Try several acupuncturists. You must stay with any one for up to 4 visits to see most beginning results.

If the pain is too great in any of your sessions klonopin or valium, even a 1/4 can allow the practitioner in deeper and more quickly making you more comfortable.

[Icybonz12 in reply to Pinky2233]

Thank you. How many mg of magnesium should I take?

[Pinky2233 in reply to Icybonz12]

Re: Magnesium

They say 420mg per day for men/ 320mg per day for woman both over the age of 30. Spinach, almonds, soybeans all good for magnesium.

Dr. OZ also writes it helps nerve pain.

[cwocn]

I've been at PT for about 3 months as well, I do feel I am progressing but I still get those "knot" feelings at the insertion site of the priiformis and the coccygeal ligament, then the pudendal acts up and a I get this ridiculous nerve hypersensitivity leading along the right side up through the groin. Not sure if this sensation is coming from bladder, vagina, or whole perineal area. This annoying (stimulating) nerve pain is so irritating. Has anyone else experienced this type of sensation? It is not a lot of times but very weird feeling when it does come on. When I sit ( which I try not to) I have achiness along the piriformis band to hips, my muscle strength is terrible but I try yoga for pelvic pain. Stretching correctly has helped but usually flares it up a little then goes away at night. I have had this problem for about 3 years, no explanation; however I see now how it slowly began years ago. I just want to be normal again, exercise more and not worry about taking my darn sitting pad everywhere (which doesn't help anyway), or deal with this nerve pain. I love my PT, though..so stick with it, it does help my mind.

[jquintile]

I have been having pelvic floor problems for 18 months now. The pain only goes away when I lay down....then my toes go numb. I've been to 17 doctors and am going to an Osteopath soon for some manipulative work....even did PT.. I've had vaginal suppositories, vaginal Ketamin and Botox injections for Pudendal nerve entrapment. The only thing I can point to for a cause is having eye shingles and being on antiviral drugs for 8 months. The doctors say, "no", but I have read that these anti-viral, antibiotic drugs can cause peripheral nerve damage. So can shingles apparently......the pain is getting a little better. I saw my neurologist yesterday and he prescribed Gabapentin and Tramadol.....I hope they help, otherwise, I will be back for more Botox and Ketamin injections.....it's been hell, limiting my ability to do just about everything. I push through most things, I can't just give up or stay in bed constantly. I hope something works for you...ice packs are my only relief......Good luck to you...don't give up and ask a lot of questions...I finally got the most help from a Urogynecologist......All the best to you.

[Icybonz12]

What are your symptoms with pudendal entrapment? My physio ruled out pudendal nerve issue with her internal exam. She says its all myofascial spasms pinching nerves not nerve causing the spasms. Ugh. I just question everything.

[Hidden]

I just started PT recently so I can't be of much help, but I was wondering if they are also having you RELAX your pelvic floor, because that is what they are having me do. I did kegels for years thinking it was so great to have strong muscles there, and now I am too tight. I am having horrible spasms. So anyway they are having me do "reverse kegels" and I was wondering if they are doing that with you as well. My PTs seem really good and they think that is really important. They have me tighten but then really relax the area.

Is there any way that you can describe where the pubococcygeal muscle is? I am trying to do some things at home but am not familiar with the anatomy.

I hope you feel better.

[Icybonz12]

Yes. I do the exercises to relax pelvic floor and allow it to stretch. I am conscience about this all day. It helps me to sit on toilet after urinating and let pelvic floor relax along with my breathing. I do this for several minutes. Try this if you havent already. The pubococcygeal muscle runs from the coccyx to behind pubic bone and its like a hammock. I am having an mri done tomorrow. I am scared that this is like a life sentence and this muscle for whatever reason is damaged. She has me do some massage to myself and it feels relieving while I do it but causes all kinds of spasms. I just dont understand.

[Hidden]

Icy, I'm so sorry you are feeling so bad. Have you ever read the book

"Headache in the Pelvis"? It is way too long, but they do have a website that makes it more brief. Anyway I'm wondering if your PT is doing it the way they are supposed to be doing it... I started pelvic PT and after years of doing kegels they have me doing "reverse kegels" because I am way too tense there. Are they doing reverse kegels with you? Also the thing everyone is doing now is myofascial trigger point release in the pelvis. It is quite intimate, but I have been so miserable that I am wanting them to start doing that with me. Are they doing that with you? Basically they find tight spots in the pelvis and work on releasing the tension. I have been so miserable that I don't even care how "intimate" the work is. Thank God they are female PTs.... I hope you feel better and if you have not read that book or if you think maybe your PT is not good, you could go online and read some kind of synopsis of the book. I read the whole thing, but it really is wayyyyyy too long.

I hope you feel better. I will ask my PT if you are supposed to feel worse after this kind of PT.

Take care