New Pelvic Pain Diagnosis: Hi everyone... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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New Pelvic Pain Diagnosis

playwrightanonymous
playwrightanonymous

Hi everyone,

I'm so glad I found this support network. I was just diagnosed with pelvic pain and pelvic floor dysfunction. I have extremely tight pelvic floor muscles and a lot of pain and have just been referred to a pelvic floor physical therapist—a doctor finally believed me about my pain and assured me it was not all in my head (after so many doctors who were sure it wasn't real). If you've had pelvic floor physical therapy, I'd love to hear how it went and if you had any success.

17 Replies
Alaine1
Alaine1Administrator

Hi playwrightanonymous,

I’ve been diagnosed with pelvic floor dysfunction as a result of pelvic pain caused by endometriosis, adenomyosis and IC. Like you my pelvic floor was overly tight although my left side was slightly weak. I had physiotherapy (privately in the UK) which was really beneficial although it took a while to feel the benefit as it took over a decade for each condition to be diagnosed. Is your pelvic floor dysfunction as a result of another pain related condition? Saying that it can occur without a long term pelvic pain condition if someone has had a UTI. I’d say it’s not a quick fix but something that takes time and there is homework with pelvic floor exercises but not kegals! I hope this helps

My doctor said it is the result of years of storing all my stress in my pelvic floor muscles, and for the past several years I've known something was not quite right (since smear tests are excruciatingly painful and tampons are incredibly uncomfortable for me), but no one actually took me seriously until recently. I've heard it takes a lot of time and effort and dedication, but overall it's a better option for the long-term than just taking medication.

Similar question as you playwrightanonymous, however I have struggled to keep up with PT for the past couple of months. It is difficult for me internally. Alaine1 do you have any thoughts, case studies; or advice?

I know that it is supposed to build positive outcomes over months at a time.

Alaine1
Alaine1Administrator in reply to SunlitSky

I understand about the internal pain but a good physiotherapist should be able to modify the exercises for you. During times when it was too painful for internal work we would focus on breathing exercises and relaxing the pelvic floor. It’s really important to have good communication with your physiotherapist and she should understand when you say it’s too painful. Do you think you might be overly tense during the physiotherapy session which might make it more painful for you? Early on when I first started the pain would often last for 3-4 days afterwards but overtime the pain subsided so I might feel low level pain for 24 hours or so.

SunlitSky
SunlitSky in reply to Alaine1

My anatomy is different. At first the initial few exercises went well and then came the pain as I progressed further - like there is a wall.

I do not know how to adapt to PT at this stage of my life. I am early 30s and single. My faith is really important to me so I struggle emotionally with making sense of all of this at times. My evaluation was this summer so it’s still new. I also struggle with the uncertainty - how much will it affect my future relationships, ability to have children etc? Thankfully I realized earlier this week that I should not ‘put the cart before the horse’ - but instead focus on being well just for me. If anyone including Alaine1 has a better understanding please do let me know.

I am almost inclined to stop PT until I am at a stage where I feel I will definitely need it.

***For example, is the primary goal of internal PT to have more comfortable GYN exams and more comfortable relationships? Or solely more so the latter?

I wonder how much it can help me with pelvic pain / pudendal neuralgia and the vestibulodynia in general.

I'm in my mid-twenties and also single. I worry about the impact it will have on future relationships and having children too; that's the reason I've decided now is the time to get this addressed. So that in the future, I will have more control over my body. My doctor told me the main purpose of sending me to PT is so that I can have comfortable, pain-free sex whenever I enter into a relationship (this has been a primary reason for me shying away from intimate relationships), so that I can have pain-free gynecological exams, and so that I will have fewer issues with pelvic pain. I'm looking forward to PT, although I'm pretty sure it will be uncomfortable, possibly painful at first. Just have to push through it, is what my doctor told me.

This helps so much!!

Your comment gives me courage to move forward. Some of the things I am not overthinking - they are practical and real concerns. I’m also glad you mentioned being proactive and acting now with treatment so that in the future there is more ease. I agree.

Lilliecat
Lilliecat in reply to SunlitSky

Hi SunlitSky

I would definitely suggest that you carry on with your PT at the moment. In my experience the road is a long one and there is no overnight cure so continue with your treatment now. The long term goal is that you will eventually be pain/discomfort free. Once this is achieved, occasional PT should help to maintain this. Please don’t wait for a later date, just continue with the help you need now. Xx

SunlitSky
SunlitSky in reply to Lilliecat

I really appreciate that, it’s helpful to know that I’m not alone in this and that it can and *will* get better down the road. Going to keep doing my best. 🙂

Can I ask how your pelvic floor dysfunction affects you??

I was diagnosed with levator-ani syndrome which causes my pubirectalis muscle to 'lock' in painful spasms which affects my Bowel from working properly.

I have been attending physio for past 4/5yrs, physio consists of internal /external trigger point therapy to help release tightening. I find this very affective and also receive botox injections into my pubirectalis muscles from my consultant. Combination of treatments really helps with intensity of pain but not so much with the frequency of flare ups.

My physio also supports me with Bowel and bladder dysfunction.

Treatments really helped me with sitting for longer periods and ability to go for short walks, more importantly being able to meet up with friends for lunch or go to the shops.

Unfortunately due to covid my treatment has been cancelled (NHS) and my symptoms have deteriorated greatly. My pain is off the scale, bladder/Bowel dysfunction worsening and my mental health not so great.

Hoping things get back to normal soon, and wish you good luck with your treatments.

How mine affects me is that going to the bathroom is incredibly uncomfortable and I often feel like I have to go constantly, so that keeps me from going out to places that don't have accessible bathrooms. On good days, I find myself trying to hold off going to the bathroom as long as possible, since sometimes that can make it flare up and make it painful and uncomfortable for the rest of the day. My muscles are just so tight that they're constantly sore and cervical exams are excruciating and tampons are impossible to use, so while I'm a bit nervous about PT, I'm looking forward to getting this under control and just being able to relax and be pain-free, finally.

I'm not sure when I'll be able to start PT, since covid is still a serious threat, but I'm just relieved to know there is help out there.

Jev1972
Jev1972 in reply to Skye22

4 to 5 years of PFPT? No lasting relief, I’m on year 4... is your PN involved?

Skye22
Skye22 in reply to Jev1972

As with a lot of pelvic dysfunction it can sometimes be not a single 'diagnosis' that causes pain.

I was diagnosed with levator-ani syndrome as I mentioned, complicated with rectocele prolapse, bladder prolapse, adhesions on bladder, bowel. Abdomen and pelvis (13 surgeries). I have severe Bowel dysfunction and have little to none "push" function that allows normal defaecation. I have daily trans anal irrigation and rely on manual extraction, sounds gross but is my normal.

My long term physio and meds and injections help me "manage" my symptoms as further surgery impossible due to severe complications.

My physio is my lifeline as without treatments symptoms are impossible to bear. Physio is every 2wks with bladder and bowel support, that's as long as relief lasts, which is amazing as I never had any relief before.

It is a long road of endless tests and trying different treatments/meds, diagnosis ( which can take yrs) to find which work for you.

Despite all this I celebrate the good days and wish everyone good health and never give up hope and finding what works for you!!

Hi

I have been having physiotherapy for over a year now, although I did have a break from February to August due to Covid.

I have a very tight pelvic floor and my pain manifested itself severe vaginal pain but more importantly, I felt like I needed to pass water almost continuously, it was difficult to deal with, and I had many sleepless nights. At times I was exhausted. I often couldn’t even wear knickers as I couldn’t stand the feeling of anything being next to my skin.

The good news is that I have finally turned a corner and after a year of feeling in pain and constantly needing to pass water there is light at the end of the tunnel.

I go every 2 weeks and initially there is a lot of homework to do on a daily basis with pelvic floor relaxation exercises and stretching. For me it wasn’t too difficult to do as I was desperate for help. At times it can be frustrating as it seems like nothing is getting better but keep going, it is worth it in the end.

Initially I found the actual therapy sessions painful and they did make it worse for a day or two. I have both vaginal and rectal manipulation/stretching. I definitely think you need both as my therapist found a lot of tightness in my muscles through rectal examination.

My therapist has always said not to think I will wake up one day and it will be better, this is a long slow process.

I am very fortunate to see my therapist on the NHS which I know is not an option for a lot of people. She does spend some of her time training other therapists to do what she does and hopefully this will be reflected with other NHS therapists offering this service in the future.

I hope this helps, please do let me know if I can help in any other way.

That's wonderful it's helping you!

On my really bad days, I can hardly stand the feeling of anything against my skin either. I thought that was just me! I've been relying on skirts and loose pants for two years now, as tight jeans or leggings will irritate me and cause flare ups, and no one made the connection between that and my tight pelvic floor muscles until recently. It's nightmarish on bad days.

I am worried about PT hurting at first, since whenever I get gynecological exams, they hurt for a couple days, at least. I'm assuming that the more I can learn to relax those muscles, the less it will hurt.

Thank you so much for your response; it's definitely put me more at ease about what to expect.

PT may be painful, I still find it uncomfortable even now. My physio says that the treatment is like peeling an onion as there is always a layer underneath. I am having a flare up today and this is the first for a week or so. I never know how long they will last but I do know that there will be some better days in the future. Once you start to get a bit of relief it helps you to see that there is hope.

Keep going and good luck 🙏

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