Have you ever had Physiotherapy for endometriosis?

[Runner92]

Hey everyone, I am a physiotherapist in the uk. I have had endometriosis for 16 years. I am researching Physiotherapy post laparoscopy or just helping symptoms. Please comment if you have ever had any Physiotherapy or post op or to help with conditions.

I writing a paper on it and would love to change the rehabilitation and condition management!

[BloomingMarvellous]

So no physio ever offered. I know my pelvic floor is pants and like any sensible woman whose resourcefully tried kegals and still has the same issue post recent surgery have done some digging. I am about to start physio but it’s by Zoom with Dr Angie Muller shortly because am not up for tightening the already tight areas and getting nowhere fast but pain central.

[Username12345678]

Hi, I have no experience of having physio but I did want to say it’s fantastic to hear that you are looking into this!I’m 8 weeks post hysterectomy for endo/adeno and when I asked the consultant about a physio referral to help with my recovery I was told it would only be possible if I’d had a prolapse. It does seem that everything is geared towards treating rather than trying to prevent/manage these sorts of conditions. I’d be really interested to hear the results of your work! Best of luck and feel free to DM if you need people to contribute in general.

[Avourneen]

I'd love to have physio for pelvic floor a friend in London had it after her excision and said it really helped. I think it's hard to get.

[Bethleah]

Hi. I had physio and they recommended a book with specific exercises to help. It takes a long time. It should be offered at referral stage to help ease pain.

[BookBimbles in reply to Bethleah]

I totally agree, along with psychology if needed.

[Bethleah in reply to BookBimbles]

Psychology has never been offered. Do t know if anyone with endo who had been offered it by nhs

[BookBimbles in reply to Bethleah]

It wasn’t offered to me but the Women’s Health Unit I attended agreed to refer me to health psychology, during a post op follow up, when I explained I was struggling to find any specialist psychology help.

[Helena45]

Hi, I'm a fellow MSK Physio and Pilates instructor who has had endo for almost 40yrs and have tried various exercise regimes over the years without any significant effect on pain levels. Sacral mobilisation has helped me slightly in the past but nothing has lasted and the pain generally has worsened as I've got older.

Post laparoscopy I've suffered with laxity of the lower abdo wall, I think due to preexisting hypermobility, and it's taken a lot of effort to get my abs to fire back up over the last year. I've also had problems with altered pelvic alignment post op possibly due to lithotomy position.

I've never had children and was in good shape pre surgery so it's easy for me to compare the before and after. Was never offered any Women's Health input at any stage along the endo journey.

Best of luck with the research, I'd be interested to read your findings once completed.

[mimilover in reply to Helena45]

HiPost surgery I had that also. Well with no estrogen now……..and no nuts, coffee , caffeine, it does get dormant . All my pain went away the last couple years except my kidney area . In my back . I was hoping that would go away and at 65 years old I could get a break. No one tells you advice about endometriosis. They shove you out the door in a hurry. Most doctors. I’m going next week with a vengeance lol. Another dr appt.

[BookBimbles in reply to mimilover]

I totally agree about the they hurry you out the door. I’m taking a printed list of questions for my next appointment

[mimilover in reply to BookBimbles]

Me too!

[mimilover]

Hi I can’t see part of your message. But want to .??

[BookBimbles]

Hello- not yet, but got it planned!

I only really found out about pelvic physio for endometriosis via the book published by Endometriosis UK, and then the recent webinar they hosted, by a specialist. It was while I was waiting for a lap, after 2 appointments at my local NHS specialist centre, where nothing was offered except hormones- or a laparoscopy - and it was me asking for the latter (the initial F2 trainee doctor I actually said to me “we just need to stop your periods” as if that would solve everything 😬).

I asked for about physio straight after surgery, and whether it would help, and the consultant said she wasn’t sure, and to wait for the post op follow up. I saw a different doctor (4th so far in the service) at a 4 week follow up, with evidence prepped for why i should have physio. This doctor said they’ve had some really good results and said she’d refer. I also asked about specialist mental health support, as I had struggled to find any, and maybe I’ve been anxious enough and pestered them with enough questions, but she said she’d refer to health psychology at the hospital. Though no idea how long that will be. I didn’t bother asking about nutrition/ dietary advice as doubt they have anyone specialist for that, but maybe at 6month review I’ll ask.

I’m not sure what the waiting list is for NHS pelvic physio, but my local one did need a referral by a consultant. There’s also a private physio practice near me, specialist in pelvic health, including endometriosis. She was recommended by a friend. So I have booked an appointment privately, with a month’s wait, which works out well as still have post op healing still to do.