By: Stephanie Prendergast
The Pelvic Health and Rehabilitation Center is excited to announce that Pelvic Pain Explained was released on January 13th! In honor of the book and the New Year, we are sharing stories from our patients that were kind enough to be interviewed for this book. Last week we spoke about Tommy’s recovery from pelvic pain. When Liz and I were working on the book, patients were kind enough to be interviewed by our ghost writer, listed below as ‘BB’. (Without our writer, this book would not be possible. Liz and I are PTs, NOT writers!). I reread the transcribed interview from one of our patients, Megan (MB), and decided to post the interview, uncut, in this week’s blog. Her story will likely resonate with many patients who have been through similar struggles. Spoiler alert: it ends well and anyone else in her early situation can have hope that they do will recover!
This interview was taped and transcribed in the summer of 2014.
BB: First question: How did pelvic pain start?
MB: I first noticed it to the level that something was wrong when I would try to have sex with my boyfriend, (now husband) for the first time and we were unable to- well intercourse is extremely painful for me, and I originally thought it was just because I was abstaining about a year before meeting him- you know if you don’t use it you lose it? After a month I started to realize I had a problem.
BB: Was it just pain with sex? Or any other time?
MB: Would be pain with sex which is attributed to my perineum that would tear every time we would have sex. It was kind of an unwanted episiotomy, but not as severe. I would get these fissures in the area to varying degrees. It’s a long journey but it does relate to muscle structure, it would take years to connect those dots. And that made intercourse difficult. I would suffer for a few days as the area healed and then I would have emotional scarring from intercourse, so it was a snowball effect.
BB: What challenges did you face in seeking a diagnosis and treatment?
MB: Oh goodness. Well I had a GYN at that point that I loved. Throughout seeing her my insurance dropped her. And I would go pay to see her because I was so thrilled with her services. So I went to her first. Her diagnosis was that I was having sex wrong. So all of my love and joy for her faded in about 30 seconds and I decided that I would be leaving her practice and there was no need to be paying her for that type of advice.
I went to a new doctor who, when I went into her office- I had literally taken pictures of the area, when it would tear, I’m, it’s just my personality, I’m an ‘anal’ person as it is. I wanted to go to a doctor and give them as much information as possible. I had a feeling it wasn’t a typical thing. I really would try to prepare and do as much as I could as a patient to get what I needed back from the doctor. So I went to the second doctor and she allowed me to talk for 30/40 seconds and she looked at one of the pictures and said that I had lichen sclerosis. I had actually looked up, I had done my fair share of internet searching, so I knew I didn’t have all the symptoms of it. She said I did have it and that she was going to do a biopsy to prove it. Ok fine. She did a biopsy of the tissue. I went back and later she told me she didn’t get enough tissue to make a diagnosis but that I did not have cancer. She prescribed me steroids anyway. I started taking the steroids, the prescription medicine, and I went on the sclerosis online board thing and it just, deep down in my heart I knew I didn’t have it but I didn’t have any other answer so I didn’t have anything else to go on. I did this for 9 months until my boyfriend and I moved and I switched physicians. The pain started in February of 2009 and we moved in the spring of 2010. I was also suffering from regular yeast infections and urinary infections. I was a hot mess.
BB: Did the steroids cause the yeast and urinary tract infections?
MB: I don’t know- I had my first UTI in the summer of 2010, I’m not sure what brought it on. I had it for two weeks before I knew what was going on. By the time I went to a doctor it was bad. Up until that point I thought it was more of my vaginal area going to hell. She was surprised at how bad the infection actually was. Now it’s about spring of 2011. I switch doctors again and this doctor suggested surgically removing the painful tissue. She says “OK well let’s cut out the tissue in the offending area and let it grow back and maybe it will grow back and heal itself back into regular tissue”. I looked at her and said “you know the tissue is my freaking vulva?” She said “I did it once before and it didn’t work but I am not sure what else to do”.
BB: And this is in Los Angeles!
MB: Yup. I tell her “thank you for your time “and in my mind you will never see me again in your life. So I have to find a new doctor, again. The next doctor I found was just focused on gynecology. And she dealt with hormonal balances and I thought maybe that’s what I have a hormonal imbalance. I was with her, probably two years, and she agreed with me that I probably don’t have Lichen Sclerosis but she didn’t have another answer. At some point she did a biopsy on me, because the other doctor never got a complete answer. That was hell on earth. Well part of it was that my skin wouldn’t numb. So she had to poke me with the numbing needle like seven times in order to get tissue, meaning my vulva. And then she did the biopsy. And she was totally fine but then she did no aftercare for the biopsy. I was screaming in pain on the car ride home.
The sample comes back and I don’t have LS. In the two years I was going to her I was also going to a naturopath, throwing hundreds of dollars at the time. I just thought they might know something I don’t. My GYN suggested I go off of birth control and onto an IUD- a non hormonal IUD, I’m taking the a supplement, I’m doing all of these things and none of it really- I think all of it maybe did a little something here and there- I stopped getting yeast infections, I stopped getting UTIs but as a whole I’m Still having a problem, the problem is still a problem. I the IUD had to be removed because of horrendous pain. So that was that year. So after this I’m beyond frustrated.
My marriage plans are on hold because what’s the point of getting married if you can barely consummate it. My boyfriend’s still there, still present but he’s getting tired, I’m getting tired, all of this money, all of these doctors. Nothing happening. So I start looking into outrageous ideas. Like specialists in other states, I will go anywhere, I need to figure this out.
The next physician I went to did an internal check and he goes “wow, you’re very tight”. But basically your muscles are so tight that they are pulling all of your skin- but he kind of compared it to a rubber band, you’re so tight that that’s why you’re tearing. So tight that the penis when it gets to the area there’s no in, there’s no bend. With the motion everything is so taught so it all tears. SO I Was like, Oh OK! This is an answer I haven’t heard before. So he says I need to go to a biofeedback therapy.
I go for biofeedback but I’m also having a skin issue at the same time. A dermatologist then diagnosed me with vulvar eczema, so I’m in about August-September of 2012. So I’ve now been on a 3.5 year journey. So 3.5 years and I’m finally getting diagnoses, answers and solutions. When both of those doctors gave me the news I cried both times, like “oh my god I’m finally getting answers”.
So I look online to find a physical therapist that does biofeedback and specialized in pelvic area. She does physical therapy with me and she was really weird and strange. I already didn’t know what to expect with physical therapy for my vagina. I was laughing like “what the fuck do they do”? So we’re there and she’s having me do all these exercises and it felt really weird, strange. I went to her for about 8 months I felt like the therapy was ridiculous. We never actually did biofeedback.
I take a break for a month or two. I find another doctor’s office by my house- and I start actual biofeedback that summer, and I do actually note some improvement against all beliefs. I did that course and then I finished that about the end of 2012 and at that point my boyfriend and I got engaged.
Things are looking up, I’m feeling better, the tearing has pretty much gone away at this point. That was huge. Throughout all of this there has been incremental progress. One of the biggest things was the tearing, the pain with sex diminished because obviously the tearing diminished. I’m in therapy so my mental health started to improve, feeling like things are good. The next year I was basically just been finding my way.
I went back to the biofeedback spring of 2013 and just kind of stayed on that course, got married and kind of got complacent to what it is- it got much better- well this is where it will just be. Sex wasn’t every 3 months anymore, when I could do other things, I didn’t have to fake orgasms anymore. Everytime he touched me I didn’t flinch. My first reaction to him touching me wasn’t no. It’s not great, but it’s good. He’s dealing with it, I’m dealing with it, we can manage this.
While I was happy I could have sex and orgasm it still hurt and I was also upset I had no sex drive. I felt dead inside. My husband and I would be fooling around and he’d be doing everything right and I wouldn’t feel a thing. I never had real desire I was just going through the motions a lot. I would search online women’s libido, going through all these products, homeopathic. And I didn’t share that with anyone- I never shared it with my husband, nobody, I’m just tired of not being normal.
And then, so then May of this year, 2014, I’m watching TV and watching a preacher and his whole thing is don’t settle where you are, don’t give in so easily. So I’m online looking around, And somehow, someway the Pelvic Rehabilitation Center comes up. I started looking at it, reading it, holding my breath where are they located? So I see they’re in SF. I’m actually from SF so I’m like that’s great they’re home but I’m not home so I’m looking and I see the new office in LA open May 5th. I made an appointment.
So I went to Stephanie and talked to her and told her all of this and she said, muscles, tissues, nerves, and blood flow, inside and outside of my vagina, were involved. It wasn’t just my vulva that was the problem. After she did an exam she said she said not enough blood is getting through to areas of arousal because everything is so tight. It’s a blood flow problem. And I didn’t cry but that was another moment of nirvana. In all my research and everything I went through it would have never occurred to me because you know your tissues are alive. The funny thing is throughout my life I have had plenty of people tell me my body is tight, and my husband all the time we’ve been together always told me that I’m uptight and tense and of course I am when you put your penis in me and my vagina tears!
Stephanie said I am one of the tightest people she has worked with, everywhere she touched inside and out was tight. So she told me what my husband has been telling me for years- you need to do yoga, so basically that has been the therapy, I also do colonics every month to monitor my yeast infections. In all my research I’ve found it’s in your gut and overgrowth in your gut and flows the other route. My infections have disappeared which makes me wonder if it was really just a result of the steroids. Do I still have the passion sex with my husband? No but can I have sex and still no pain? Yes. Can I orgasam on a regular basis? Yes. There’s still mental blocks, absolutely, and Stephanie gave me the name of a sex therapist they work with.
But I’m just so tired. So I haven’t gotten to my “great” yet but I am much closer. My dead body has woken up. Like I said there is no tearing, there has been a lot, a lot of progress. Stephanie promised me that she’ll be my last doc.
As mentioned earlier, Megan gave her interview in 2014. Now that is 2016 and the book is published we can finish her story in our blog.
When I evaluated Megan, she presented with external and internal connective tissue restrictions as well as muscle hypertonus. She was working out aggressively with weights and not really stretching. Despite her vulvar pain at the time, her pelvic floor muscles were not as tight as some of the other muscles of the pelvic girdle. This was likely because she was committed and compliant with pelvic floor muscle relaxation exercises, or ‘downtraining’ with biofeedback in the PT office at home. These exercises, in combination with cessation of unnecessary steroids and resolution of the yeast infections, resulted in improvement but not enough improvement.
It was my initial belief that the impaired external muscles and internal/external connective tissues were contributing to her remaining discomfort. I suspected the lack of libido was from years of emotional distress and pain, understandably.
I treated Megan for 15 visits, between her initial evaluation in May 2014 and the time of the interview. Our appointments were one hour in length and consisted of manual therapy and neuromuscular re-education. Her home program consisted of holding off on weight training and focusing on foam rolling, yoga, massage, and continuing pelvic floor muscle downtraining exercises.
Her pain with intercourse resolved. Her libdo, as you read, was still an issue. My initial suggestion was for Megan to speak with a sex therapist to help her transition from years of painful sex to feeling pleasurable sex again. I completely understand her lack of desire to do this after years of providers. Around the same time we were discussing this, in the fall of 2014, I heard Andrew Goldstein speak about vulvar pain secondary to oral contraceptive use and the fact that a high number of women on birth control pills struggle with a their libido.
I returned from the conference and spoke with Megan about switching to the IUD. Based on her past negative experience with the IUD she did not want to pursue this route. We revisited where she was at the time of her last IUD: she had severe unmanaged vulvar pain, was using a steroid that was likely making it worst, and had unresolved infections. I suspected now that she is healthy this trial will be more successful.
It was, the IUD was implanted with no complications or subsequent pain.
I emailed her this week for an update for this blog, here is what she had to say:
“After the work with PHRC I felt that my structure had improved greatly but I was still missing something as my libido was low and my body still rather unresponsive to sexual stimulation. Thanks to a referral I found an acupuncturist who helped me in that area and combined with all the progress I had made – I finally feel like I have my body back and it is functioning and responding like it’s supposed to!! PHRC was literally that place that put me on the path to my absolute healing and I’m forever grateful.”
People can and do get better from pelvic pain. We hope our book and posts help people streamline their own treatment process and get on the path to success!
To read more about the content of Pelvic Pain Explained and to order a copy click here.