vulvodynia

[ClareLou]

I just wanted to share some good news in the hope it will inspire or give someone who might be struggling a bit of hope.

I have both vulvodynia and pelvic floor dysfunction. In the past smear tests have been a major trigger for pain to the point where in one of them I fainted.

But yesterday I had a smear test no pain and was in and out in 10 minutes.

In terms of what I have been doing

*pelvic physio with exercises at home I have been doing this on and off for the last 12 months both NHS and private

* using dermol wash as a soap substitute in the shower

* using an allergy friendly laundry liquid to wash underwear

* I used e-consult to book my smear test so that I could explain all my issues, tiggers and what helps beforehand without feeling rushed. The nurse was amazing and was really patient.

* I think the other thing that helped was due to covid there was less time waiting in the waiting room getting anxious. So in the future I might try and book the first appointment.

I just want to say thank you to everyone who has posted or answered posts in the community it all helps

Best wishes,

[Alaine1 Administrator]

That’s really fantastic! I’m so pleased for you as there is nothing worse than being in pain and knowing you the test will cause pain both during and afterwards. Would you say your vulvodynia is reasonably under control now? Thank you so much for sharing. We love to hear positive outcomes that have not only helped you but also could help others

[ClareLou in reply to Alaine1]

I would say it’s got a lot better but I think it will always be something that stays with me. I think stress and tension is definitely a trigger for me so I need to be mindful of that which is easier said than done.

[EffieT]

I am so happy for you! I suffer from the same thing I think, so you have made me hopeful. I was wondering whether to continue with physio because I have little change after 3 months, but I will go on for a while longer. Thanks for sharing.

[ClareLou in reply to EffieT]

I think what makes it so hard is that if you had leg or arm muscle that you were having therapy for you can see the limb becoming better you can’t see the pelvic floor so you need other information to tell you the physio is having an effect. Maybe ask your physio for some ideas about bio feedback so you can get a sense of things changing

Good luck I hope you find the breakthrough you need

[Anna1101]

Thank you ClareLou for sharing your experience. I am on the beginning of the journey. In Dec ‘20 been diagnosed with vulvodynia. Have started breathing exercises with physio; have ordered vaginal dilators to try with small size first . Already using Epaderm ointment instead of shower gel; Will come back with updates in few months to see if i notice any difference.

[ClareLou in reply to Anna1101]

Good luck I know how frustrating it is at the start when you just want to see some quick wins hopefully you find a set of things that work for you

[Odessa1]

How did you get a pelvic floor physio on the NHS? My NHS consultant merely confirmed the diagnosis already provided by a private consultant, told me to keep using the lidocaine ointment & go on HRT. Did you have explicitly ask for the the physio referral?

[ClareLou in reply to Odessa1]

Hi I was first sent to the hospital gynaecology team first for an assessment by my go, then gynaecology sent me for the physio

[EndoJaz]

Hi Odessa 1, I just did an econsult with my surgery then went in for an appt, she checked and confirmed my prolapse then referred me to the hospital for physio. I had a few telephone appts but now actual face to face. I am scared tho as the first appt was quite full on and have to have a few painful sessions to loosen up adhesions and scar tissue. Ask no tell the GP you want to see a physio. Good luck x