Floored by condition: Emily Rose O'Donovan uses yoga to deal with her hypertonic pelvic floor pain

Doctors are only now starting to understand the issues associated with the hypertonic pelvic floor. Yoga can help ease the often chronic pain, writes Jacqui Corcoran

Floored by condition: Emily Rose O'Donovan uses yoga to deal with her hypertonic pelvic floor pain

Doctors are only now starting to understand the issues associated with the hypertonic pelvic floor. Yoga can help ease the often chronic pain, writes Jacqui Corcoran

From the age of 11, Emily Rose O’Donovan started experiencing symptoms that felt like those of a urinary tract infection. She felt a constant urge to urinate, had a burning sensation in her vagina, and was in constant pain. Repeat doctor’s visits produced similar results: There was nothing wrong, her urine tests were clear, she didn’t have an infection, she was imagining it.

“Preparing for doctor’s visits,” says Emily Rose, “was like preparing to go into battle. It felt like I was being scolded for being troublesome.”

The symptoms eased when she was around 13, but returned in her later teens. “I was freaking. I thought, ‘Oh god, back into this nightmare’. The doctors couldn’t understand why I was upset. They told me to stop getting so worked up.”

Test after test was carried out. She was referred to specialists. No diagnosis. This pain will be in your life from now on, a doctor told her. Do you feel depressed, suicidal? Of course, she said, wouldn’t you?

Emily Rose couldn’t move much, think straight, or sleep. She was constantly crying. They tried her on IV antibiotics. She was prescribed strong sleeping tablets, which gave some relief, a break from the pain. She went to urologists, gynaecologists. They carried out cystographys, urethral dilation, she had a laparoscopy camera inserted through her belly button. They thought endometriosis was the culprit. She had surgery to “burn it off”.

“I woke from surgery, looked down at my pants. It looked like an alien had exploded there.”

Even more creepy than that experience, she says, was when a doctor told her she needed to relax. His advice? Get a copy of Fifty Shades of Grey and a vibrator.

“Back in history they used to prescribe dildos to women to help them calm down. I couldn’t believe what I was hearing.”

Time went by. Emily Rose explored alternative medicine. “I went to some witch doctor guy in a cow shed who treated people and horses. I tried herbalists, hypnosis, counselling. I tried everything.”

She tried acupuncture in her vagina and perineum. “It was so embarrassing, degrading, but I was desperate. The needles were hooked up to a machine which transmitted electricity. I felt violated.”

She was prescribed strong antidepressants. Are these going to be scary, she asked. Oh no, they said. They were scary. She had severe side-effects, borderline psychotic episodes where her skin crawled, she was terrified of sun, broke out in terrible rashes, was irrationally terrified of the world outside the house. She thought she really was going crazy.

In desperation, her mother took Emily Rose to the Mayo Clinic in Minnesota. There, one doctor co-ordinated a multi-disciplinary approach. He started their consultation by apologising on behalf of all the doctors who had failed her. Emily Rose and her mother started crying. One of the appointments he arranged was with physiotherapist Dawn Underwood. It was a turning point.

“She examined me and said my vaginal muscles were really tense. She told me to do particular yoga moves and practise some deep breathing work. She said it was a pelvic floor issue.”

For many women, Emily Rose learned, pelvic floor dysfunction manifests in the guise of underfunctioning pelvic floor muscles, leading to urinary incontinence, often occurring after childbirth and tackled with the use of incontinence pads, sometimes physiotherapy, sometimes surgery (including the controversial ‘bladder mesh sling,’ highlighted in recent media reports and a Prime Time special).

“After almost 10 years of searching for answers, Dawn Underwood gave me a firm diagnosis of hypertonic pelvic floor. It’s sort of the opposite of that underfunctioning muscles issue. Basically, my muscles were tight, but not in a sexy way. My pelvic floor was going into severe spasms which caused the excruciating pain. I wasn’t crazy.”

With a proper medical diagnosis, she thought it would all be sorted. She started doing the yoga and breathing. The symptoms didn’t go away, but she had something to work with.

Back in Ireland, Emily Rose attended Laura Carroll, a physiotherapist at the Livewell Centre in Waterford. “I arrived at her door feeling exhausted and bedraggled. I begged her to do something to help. She conducted an internal massage. She was so calm and comforting. After just one session working on releasing pressure points in my vagina, my pain was quite literally halved. I couldn’t believe it. This was the really big breakthrough. These days I have it pretty much under control. Physio, exercise, diet, and relaxation all have a role.”

GPs don’t always recognise that symptoms such as pain during intercourse, general vaginal pain, and a constant urge to urinate can be linked to hypertonic pelvic floor. The condition can often go undiagnosed.

Dr Suzanne O’Sullivan, a consultant urogynaeocologist at Cork University Maternity Hospital, agrees. “It’s really only starting to be recognised as an issue or syndrome now, so awareness isn’t widespread. The pelvic floor is really complicated, there’s a number of organs in the area, as well as the genital tract, layers of muscles, nerves. It’s just not appreciated how complex it is.”

General pelvic floor dysfunction is extremely common and 50% of women will experience stress incontinence at some time. 12% of women will undergo surgery for incontinence or prolapse in their lifetime, with 30% of those requiring further surgery. However, explains Dr O’Sullivan, while statistics are readily available for more generally known problems, the same is not the case for hypertonic pelvic floor. “We don’t have hypertonic pelvic floor statistics yet, because it is still under-recognised.”

As a specialist working and teaching in Ireland and internationally, chartered women’s health physiotherapist Michelle Lyons has worked for over two decades in pelvic health physiotherapy. She agrees that hypertonic pelvic floor, which can develop from a number of causes — various traumas, constipation, urinary tract infections, and other triggers — is common but underdiagnosed in Ireland. While her international experience would lead her to believe that Ireland is a global leader in terms of expertise at the treatment end (in particular, in the area of physiotherapy), we fall behind other countries in terms of initial diagnosis.

“GPs have to know a little about a lot. Not every doctor will be in a position to give a pelvic pain diagnosis, and we’re seeing that more than a purely medical and surgical approach is needed. A multi-disciplinary, integrated approach is most effective, where GPs and indeed the general population are made more aware. It doesn’t just affect women. Men can also experience this condition.”

Emily Rose, now in her twenties, lives a generally pain-free life. “It’s been liberating. I don’t think I knew how to be properly happy until I was that sad. To be able to sit here not feeling pain, is wonderful. I just wish it hadn’t taken so long.”

Referring to a YouTube monologue from Zosia Mamet (who also suffers from hypertonic pelvic floor) in which the actress describes her quest for diagnosis and a litany of treatments including one doctor’s radical method of killing any bacteria that might have been causing her pain, Emily Rose says:“I count myself lucky, I might have had my vagina electrocuted, but at least I didn’t have acid squirted in there.”

If there’s a darkness to Emily Rose’s humour, it’s easy to understand why. She says there have been positives, however. Because of her experience, she has gone on to study human anatomy, physiology, psychology, and active holistic massage. She is on the verge of setting up her own business. She laughs as she says her vagina has served her well in terms of relationships, too. “It’s like a metal detector for finding good men! If you’re trying to maintain a relationship while you’re in pain, it tends to go one of two ways — either you find the super boyfriend who makes you feel like a warrior princess for your bravery or the rubbish one who says nobody is ever going to love you when you’re sick all the time, quit whining.”

Her final word to anyone going through similar experiences: “Talk about your vagina, it doesn’t need to be silenced. Don’t live with pain.”

If you have similar symptoms talk to your GP or a chartered women’s health physiotherapist. See list of chartered physiotherapists at iscp.ie/ Michelle Lyons’ website is a useful resource: celebratemuliebrity.com/

Floored by condition

Doctors are only now starting to understand the issues associated with the hypertonic pelvic floor. Yoga can help ease the often chronic pain, writes

Jacqui Corcoran

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