1st post - 29 year old with constant vulvodynia & pevlic pain who's missing doing exercise - any suggestions?

[ElizabethAGC]

Hi all,

This is my first post so I hope it makes sense and itsn't too long! I started with pelvic pain and vuvlodynia 6 months ago. I am under the care of the GP and specialists but no reason has been found yet and I am following all the advice in terms of medication and life-style changes*.

I used to do exercise about 4 times a week, usually 5-10 mile walks and HIIT on the treadmill (walking with regular bursts of sprinting), also some weight training, aerobic work-out videos and cycling when I got the chance.

The pelvic pain and vulvodynia have gradually got worse of the last 6 months and I had to reduce the exercise and I eventually had to stop.

Now I find walking for more than 10 minutes to the shops irritates my symptoms.

I am making life-style adjustments to manage and cope with the pain and discomfort. There's a lot of things I can't do right now that I used to do, but at the moment I am particularly missing the regular exercise I used to do. I am 29 and not overweight, but I miss exercising and would like to do something that won't worsen my symptoms.

I am considering trying some sort of stretching based exercise, like yoga or pilates? But I've done neither before.

I have an exercise mat and exercise ball at home (also dumbells and a treadmill). I am happy to buy an exercise DVD if it would help.

As for my symptoms, I have lower constant pelvic pain which feels like a mixture of period pain and cystitis. I have constant valvular pain, with itching and burning sensation in the area.

Currently the itching/burning is the hardest symptom to deal with and control and the symptom which is more easily worsened by exercise. I gingerly walk around the house and have to do house work very slowly. The pain gets particularly bad when travelling, I had to make an unavoidable trip last month and my symptoms became almost unbearable for more than a week after. I think this was a mixture of walking, carrying luggage, sitting in a less than optimal position for a long time, and not being able to cool down.

To reduce the pelvic pain and vulvodynia I wear long skirts with no underwear in the house and sit on a 'Putnam's Sero Pressure' cushion (legs apart, not crossed or together). When I sleep on my side I need a pillow in between my legs. I don't use soap, perfume, wear tight clothes et cetera...

So I am looking for an exercise which I can do from home without having to wear restricting clothes and which doesn't cause intimate friction, or too much bearing down on my pelvis.

Knowing that at the moment 10 minutes of walking can worsen symptoms, I realise I might be asking the impossible, and may just have to wait until my symptoms start to improve before doing exercise.

I am willing to do a certain amount of trial-and-error, trying out different exercises, but I know 15 minutes of "wrong exercise" could put me in bed with pain for the rest of the day. So I thought I'd ask on here to hear about any personal experiences which might help me before I start.

So if anyone else has had any similar experience or any suggestions about what exercises I could start, that would be appreciated.

Elizabeth.

*In case you're wondering, or it helps answer the question the clinicians have ruled out PID or infection, sexual hormone levels are normal, ultrasound of womb, ovaries, kidneys and bladder are normal, the inside of my bladder by cystoscopy is normal, I drink plenty of water and my bladder fills and empties normally, I avoid all known irritants (caffeine, alcohol, smoking for bladder, or using soap, perfume for vulva...), the doctor at the family planning clinic said my pelvic floor muscles were fine.

[Cardinal]

What about gentle swimming or gentle water aerobics? Would that work? I have a different type of pelvic pain than you, but some stretches made mine worse. But mine is nerve pain. Maybe you could try just a couple different stretches per day and see if you can tolerate them. Maybe do stationary strengthening exercises such as a plank, if that works.

[ElizabethAGC in reply to Cardinal]

Hi,

Thanks for the reply

It's interesting to know that stretches can aggravate some pelvic pain, depending on the type of pain. As you say, I think it's a good idea to try a couple of different stretches per day and see how it goes. I hadn't thought about stationary strengthening exercises like the plank, so it's great to have extra ideas.

Unfortunately swimming is not a good option for me because I think I would find the swimsuit restricting and chlorine irritating. Leaving the house is a bit difficult too. However, I hear that swimming is a beneficial and gentle form of exercise so one to consider when I start to improve.

[Joolibee]

Hi Elizabeth. A lot of what you say resonates with me, except that it eventually turned out that my pelvic floor muscles were involved. In my experience, doctors are not that good at identifying soft tissue problems. Of course, your case might be different, but it took me years to find help that was of any real use. I only began to make improvements after finding a physiotherapist who was specifically trained and experienced in dealing with pelvic pain. They were able to apply gentle pressure to muscles that replicated the pain and sometimes referred pain elsewhere. I still have symptoms, but there has been noticeable improvement and I'm hopeful for more improvement still. Regarding exercise, I find that very gentle yoga helps, including meditation. Also, have you come across Amy Stein's book, Heal Pelvic Pain? She suggests excercises that might help, as well as offering advice in general. For exercise, I have low crotch harem pants, preferably with seams on either side of the crotch rather than in the middle. I can wear them without underwear. I wish you luck.

[ElizabethAGC in reply to Joolibee]

Hi Jollibee,

Thanks for the reply. I'm glad you were able to eventually find the reason for your pelvic pain and a physiotherapist who could help. Although it must have been frustrating for it to take years.

It's helpful to know your experience, and I probably shouldn't rule out pelvic floor muscles as a problem after just a brief examination.

Thanks for your tips about exercise and yoga. And about the book too - I've just had a quick look on Amazon and it has great reviews, plus it mentions IBS too, which I have. Looks like it might be worth buying. I hope you continue to improve.

Thanks again.