Pelvic floor spasm pain: Any advice or tips... - Endometriosis UK

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Pelvic floor spasm pain

Pollyanne515 profile image
7 Replies

Any advice or tips out there for spasming pelvic floor muscle please?Total Hysterectomy with BSO, stage 4 Endo.just over three months ago, been told that the residual pain is pelvic floor spasm. I am really struggling, I am tired of struggling 😞

On nortriptyline, would be so grateful for any stories of hope or tips please

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Pollyanne515 profile image
Pollyanne515
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7 Replies
Aarwin profile image
Aarwin

Hi Pollyanne515 ,

So sorry your having the same pain as me. It's annoying . I get physio the exercises help me but still get spasms. I'm 6 months nearly post op. They told me it's nerve pain too. The diaphragmatic breathing helps a bit.

Did you manage to get the lidocaine patches ?

Don't struggle alone there is always help in this forum. I feel your pain. 🙏

Pollyanne515 profile image
Pollyanne515 in reply toAarwin

Hi Aarwin,Lovely to hear from you. I did ask about Lidocaine and got told no not yet, they would try other things first, she said gabapentin would be next to try.

I just wish everyone would stop experimenting with me. I so wish to be able to control the pain.

I agree, some of the physio helps a bit, am doing the breathing.

As more time goes on the expectation from friends/family/work is that you must be getting back to normal. The sadness I feel when instead of the surgery helping me, I am in the same position, albeit different pain for a different reason but pain nonetheless.

Also feeling so emotional, crying at anything and everything

Aarwin profile image
Aarwin in reply toPollyanne515

Pollyanne,It's such a big operation and recovery time . Three months is so early ...I'm back at work three half days and really struggling. Exhausted,pain ..sore back. I totally get that there is an expectation from family ,friends etc. I feel that too and you know see this crap it's three months recovery . It's not ! I get annoyed when people say that. It's hard going but we know there is light at the end of this tunnel.

I had mentioned hrt before but guess what on Monday I'm told I should have progestogen now . As a preventative measure to stop endo ever returning. I agree with you you feel like an experiment. I'm scared to put these patches on now as I don't know how I will be and I gave to work.

PollyAnne the emotional side will calm down . I promise . I was all over the place crying at anything ,nothing at times . I'm getting there now . Remember out bodies have had such a shock emotionally and physically. We need to be kind to ourselves and say it's ok to feel this way.

I'm sending you a big hug and healing.

P s I haven't tried gabapentin just the amitriptyline which made me a zombie.

Endofitall profile image
Endofitall

I’m so sorry for your suffering. Are you having any dedicated pelvic floor physio (by endo physio specialist) with manual work? This made a big difference to me post op though I’ve not had a hysterectomy.

Could you afford any acupuncture or another holistic therapy right now? Seeing an acupuncturist has really helped me emotional state in the past two years. I feel a different person. I am sorry I realise not every can afford that tho and I’m lucky to have parents funding sessions for me.

I really hope you get some support and solutions. Please go and speak to a supportive GP if you’re feeling the emotions are too much.

Pollyanne515 profile image
Pollyanne515 in reply toEndofitall

Thank you for replying....Yes I am seeing a pelvic pain physio, early stages but she said there is further things she can try.

Funny you should mention acupuncture, as I have been looking for a practitioner online today, having read it can help with pelvic floor spasms, I figure anything and everything is worth a shot, really fighting to get a quality of life.

Have had it in the past, but for migraine, which didn't ever really help. However, will try a different clinic and keep fingers crossed......

Try listening to Leah Brueg's conversation on her podcast number 52 /57 (?) instagram @leah-brueg with Dr Angie Muller who is a specialist Dr in physiotherapy for pelvic floor recovery especially around Endo/ post surgery.

She also has an instagram feed @corerecoverypt.

Pollyanne515 profile image
Pollyanne515 in reply toBloomingMarvellous

Thank you, will have a listen

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