Altered sensation after Dilator exercises

[HopefulOphelia]

Hi all,I would really appreciate some support and guidance as I have a hypertonic pelvic floor muscle (for about 8-9 years).

I have tried many approaches over the years but recently return to focus on physiotherapy and dilator stretches - on an intensive approach this time- completing a passive stretch daily for 90 to 150 minutes). Aim to do this for amonth as dedicating this time is not possible long term.

After restarting the exercises, I commenced having Vulvadynia type pain (on / off across the day with no particular trigger per episode of pain / discomfort). I also experienced UTI style symptoms (urgency with empty bladder / that horrid tingle / discomfort etc). Thankfully after 2/3 weeks this had started to reduce - still there but less intense. However, I had one day off the exercises yesterday and resuming today took me stright back to the beginning and again I had UTI style sensations and muscle very tight (tbh each day it always seems to go back to my tight baseline)

I just feel totally helpless as have been reassured that once able to stretch the muscles and return to having intercourse this will maintain the muscle, but the reality is we won't be having intercourse every day so if it only takes one day break to return to square one again - how can this ever be the case?

Just reaching out to see if anyone has experienced similar in:

1) having other sensations (vulva pain/ UTI sensations) when doing dilator exercises? If so, how have you overcome this / managed this?

2) gone from having tight muscles and no intercourse due to pain to having intercourse again and maintaining muscles capacity to stretch.

Thank you 😊

[CernCrystal]

Hi, not sure if this helps but I was diagnosed with an overtightened pelvic floor which I found really distressing and I'd actually made worse by increasing tightening exercises as I mistook sudden spasmic urination (so tight down there I was orgasming without trying - spontaneously which is incredibly unpleasant and can go on for hours) for incontinence. I saw a great gynie physio who gave me exercises to relax. I now have a great sex life but I can only have sex after already having orgasmed before penetration - seems to help the muscles relax and gently allow penetration and then penetration orgasms. The key thing I did too (on her advice) was address the anxiety that had built up around it all. Understanding the body, how it works down there, relaxing and what anxiety was doing - plus discussing with my partner, who is great and was really keen to understand and help. Interestingly I was the first person to have gone to her with this condition. Hadn't realised it is also called hypertonic!

[jaded1988 in reply to CernCrystal]

I haven’t spoken to anyone who has had spontaneous orgasms. Since I’ve been ill after covid my nerves down there are so so sensitive and I can orgasm with very light touch or even spontaneously during sleep. It’s completely not normal for me. I also find after I urinate the pelvic floor muscles tighten and I think they irritate the nerves and it feels like a constant urge sensation a bit like when you need to orgasm. It really is very unpleasant. I have wondered if this is due to a tight pelvic floor or my underlying neuropathy. I’m in a lot of chronic pain so probably tense my pelvic floor muscles all the time. Do you have any advice on what to do? The orgasm feeling thing is horrendous and really getting me down. I actually find I tighten up even more after I’ve orgasmed. Do you have EDS by any chance from your Zebra picture?

[CernCrystal in reply to jaded1988]

Hi I don't have EDS - the picture was dynamically allocated I think! Your situation sounds rather like mine down there but mine is now well managed (thanks to gynie physio who was sooo lovely). I found that my pelvic floor was contracting my pudendal nerve - which on the one hand had enabled me to enjoy multiple orgasms but on the other hand can be over tightened easily - this tightened everything - bladder, anus, and vulva/vagina etc. I now avoid all pelvic floor exercises (Kegel) and no longer aspire to a flat stomach - prefering the "after sneezing or coughing risk" to the pain around my bladder and the spontaneous orgasms. I mentioned the anxiety and that was key to helping me relax and not fear what was happening - the more fearful I was, the more tense and the more it happened. I felt I was going mad, stopped leaving the house and also felt that people wouldn't believe me. I also found out that it can be refered to as PGAD (Persistent Genital Arousal Disorder) and I found a support forum. I was really struck by how many women had had their mental health affected badly and I realised that this needed addressing and also talking about. Your situation does sound much more complicated and I hope that you find solutions and ways to manage symptoms. I have recently gone on a journey to look at what I'm putting in my body and how my body uses things (without having to give up the essentials (prosecco, sherry and chocolate - yet!!) and have found great improvements after greatly reducing complex carbs, removing gluten and taking some supplements orally (under tongue) as I don't believe my stomach acid is effective. My periferol neuropathy has greatly reduced from that but of course that could have been B12 and Folate deficiency (which I now take). Best of luck on your journey.

[M3t4l in reply to CernCrystal]

Which Gynae physio did you go to please? I'm in the Uk, currently Oxford but happy to travel. i do not feel relaxed with the current person i have had for 3 years and i think this would really help

[CernCrystal in reply to M3t4l]

Hi, I saw a lovely woman who had retired and had come back to support the department with post Covid staffing and recruitment issues. This was with the NHS. I found this for Oxford but believe it is private, but they state that they deal with pelvic physio. oxfordphysiotherapyclinic.c...

[HopefulOphelia in reply to M3t4l]

Hi M3t4l,I currently see a lovely physio with a great holistic approach called Louise Ford who works for the NHS in Warwickshire - if there is anyway you can see a PT in a neighbouring county, I'd recommend

[zozzie in reply to CernCrystal]

I have been diagnosed with PGAD and this all sounds very familiar. As of now, not much has solved anything only helped with tolerating it. And no findings as to what started it. However, I have progressed from slight incontinence to near total loss of control from avoiding anything other than pelvic floor relaxation. Dialators do help stop throbbing .....

[jaded1988]

I’m afraid I’m in the same situation as you so sorry I have no advice. I also have a hypertonic pelvic floor maybe due to hypermobility but also due to an inflamed bladder which is chronically infected in the bladder wall (according to my urogynae dr Prof Khullar). I was given antibiotics which I can’t tolerate and Botox injections under anaesthetic which I’m too ill to do. I was trying to dilator therapy but wasn’t getting anywhere but I gave up as I have vulvodynia too. Intercourse has been impossible for several years. But I have other chronic illnesses too so a bit complicated.

[HopefulOphelia]

@CernCrystal and @jaded1988, thank you both so much for taking the time to reply. CernCrystal - thank you for giving me hope that there is a light at the end of a dark tunnel.

jaded1988 - I'm so sorry to hear you're in the same boat and suffering with multiple issues. From what I can tell, it appears issues downstairs are never straight forward and seem to always come with a myriad of complications! So frustrating. If I arrive at any good techniques I will share 😊

Very interesting to hear about the spasmodic urination and spontaneous orgasms - had not been aware of this before. I have only orgasmed following penetration and given I haven't been able to enjoy penetrative sex for years the actual sensation is a bit of a loss with me so maybe it is linked?? It certainly isn't pleasant though so not sure I want to orgasm if that's how it feels 😕 and like jaded1988 I previously tended to tighten more post orgasm than less.

I have seen a few different sex / relationship therapists and do find relaxation and breathing helpful in general with life but unfortunately that alone can not release the tension I consistently hold in my pelvic muscles. Currently doing a meditative course on managing chronic pain to try and view pain differently to see if that helps...

From other reading I was wondering about trying amitriptyline to help with taking the edge off the painful / different sensations experienced whilst I'm trying to tackle actively stretching the muscles. Have either of you tried it? Did it help?

Thank you

[M3t4l in reply to HopefulOphelia]

I've been on amitriptyline 100mg a day for years. It's helped ease pain but done little to nothing for tightness. I'm now stuck everyone is different though.

[HopefulOphelia in reply to M3t4l]

Thank you 😊I started Amitriptyline yesterday (at 10mg to start with) so I'll see how it goes. My aim with it is to take the edge off the pain / other unpleasant sensation, whilst I work on stretching the muscles using the dilator. Trying to break the pain - tightens muscles - causes more pain etc. cycle. As although the mindfulness has helped my perception of pain in general, the sensory - motor loop seems to still kick in at times.

[CernCrystal in reply to HopefulOphelia]

Hi Jaded 1988 and I had a private chat (happy to talk about personal experience that has helped me and may help others) so if you're happy to do it privately I can copy and paste......

[HopefulOphelia in reply to CernCrystal]

Hi CernCrystal, that would be most helpful, thank you. Hearing from you both has really helped me on a mental level as I was so down over the weekend about it all.I feel really draft in asking but what's the easiest way to connect privately? Is there an option on here or is it best to share numbers lol 🙄

[CernCrystal in reply to HopefulOphelia]

At the top of the page, two in from My Feed is chat!

[edythe]

Hi HopefulOphelia, you have already heard from various sufferers with some ideas of what has or has not helped them. I haven’t got the same problems as you but have long experience of pelvic pain and a hypertonic pelvic floor. I have been vitally supported by two physiotherapists to whom I relate very well and I am certain that improvement is dependent on feeling understood and supported. So my advice is to look for somebody else!

Secondly, you write that you have more pain /symptoms after all this stretching. What about finding a physio who takes a different approach? I have made considerable progress with a variety of relaxation treatment and exercises adapted to my needs - initiated by the expert physiotherapists. I would have been desperate if I had followed your method.

[HopefulOphelia in reply to edythe]

Thank you Edythe. I appreciate your time and response.

It has ultimately been desperation that's led me to trial this approach. Unfortunately relaxations alone don't relax my pelvic muscle fully but saying that I have found relaxation and mindfulness very useful in my journey to where I am now. I am doing a managing pain mindfulness course whilst doing the stretches to support in viewing the sensations differently and this is helping to some degree.

Just to note though, this wasn't recommended by my physio, it's just an approach I wanted to try to see if it made a difference and I was able to move past this frustrating situation where by I start a new approach - the Vulvadynia is triggered - I loose faith and stop the approach and end up at square one.