Introduction And Exciting Announcements
Hello and welcome! I am so glad to be back. I have missed y’all so much. We are back with all things Lichen Sclerosus. This is episode 1 of Season 3 of the Lichen Sclerosus Podcast. Today we are going to be chatting about all things pelvic floor physical therapy with the amazing Ashely Stump, PT, DPT.
Ashley was one of our speakers at the Lichen Sclerosus Holistic Summit – the first of many fundraising events for the Lichen Sclerosus Support Network. She is so knowledgeable about pelvic floor physical therapy and Lichen Sclerosus.
If you’ve ever wondered how pelvic floor physical therapy could help your Lichen Sclerosus feel better, be sure to give this podcast a listen and bookmark this page so you can return to it for important tips and tricks!
Lichen Sclerosus Support Network – A Huge Thank You To Our Sponsor!
However before we jump into today’s episode, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN), for making this podcast possible. LSSN is working towards getting people diagnosed earlier and getting treated better.
Be sure to follow them on IG and FB @lichensclerosussupportnetwork.
What is Pelvic Floor Physical Therapy ?
Pelvic floor muscles have many functions. For example, they contribute to intimacy and sexual function, they keep our urine and excrement inside, help with pelvic organ prolapse. They have different roles; just like a muscle we can see like our bicep, they act like those muscles. Just like people hold stress and tension in their neck muscles, people can hold stress and tension in the pelvic floor muscles.
Similarly, just like people can strengthen their bicep or quadriceps muscles, they can strengthen their pelvic floor muscles.
How can Pelvic Floor Physical Therapy help people with Lichen Sclerosus?
Specifically, with LS, when the tissues are changing and becoming fibrotic and scar tissue is forming, PT can help those tissues become more elastic and increase blood flow to the area. This is achieved through gentle stretching and massaging of the scar tissue.
However, one may still wonder about the relationship between scar tissue and pelvic floor muscles.
To better understand the relationship between the two, Ashley draws the analogy of an ACL tear. When one tears their ACL and they get surgery. Scar tissue automatically forms from this.
Consequently, a pelvic floor physical therapist would work on this scar tissue to help decrease it and to make the scar more mobile.
Because this affects the surrounding muscles. Specifically, if the scar tissue is stiff, that will restrict the muscles by that scar and restrict their function.
Therefore, pelvic floor physical therapy can help people with Lichen Sclerosus by gently working on those tissues and scars tissues to increase blood flow, and help with intimacy issues. Similarly, pelvic floor physical therapy can help clitoral adhesions with gentle release and massage, similar to scarring at the base of the vagina.
Furthermore, pelvic floor physical therapy can help with anal Lichen Sclerosus as well. Thus, even if you just have LS around the anal area, a pelvic floor physical therapist can help with this too.
Pain and Sex with LS
In my interview with Dr. Krapf (listen here), she explained the reason we have pain with sex is that there is scar tissue forming at the base of the vagina, and when you have penetrative sex you are tearing it. Further, if you aren’t using your steroids, it re-fuses and keeps tearing.
Moreover, Ashley notes, this feeds into the pain cycle too. That is, if you are continually traumatizing the area, the muscles tense up trying to protect the body from this stimulus. The muscles interpret this as danger. Therefore, pelvic floor physical therapists will work on those muscles and help them adapt to non-threatening stimuli and to decrease the pain cycle.
As they become more comfortable with stimuli, they may interpret penetrative sex as non-threatening. Thus, when you attempt penetrative sex, your nervous system won’t be so heightened and on-guard, and the muscles can relax, which will decrease pain upon/with penetration.
The Pain Cycle of LS and Sex: Reasons You Should See a Pelvic Floor Physical Therapist
Critically, Ashley notes the pain many of her patients with LS experience during sex is a combination of scar tissue and reflexive contractions of the pelvic floor muscles when a stimulus enters the vagina.
Reflexive contractions occur when the pelvic floor muscles contract to block out and shut down any stimulus entering the vagina. This often occurs because of a pain cycle whereby a patient experiences painful sex, and then the muscles encode this stimulus as ‘painful’ and ‘dangerous’. Consequently, the muscles contract to protect the body from more pain. Thus, because patients with Lichen Sclerosus often experience painful sex because of reflexive contractions of the pelvic floor muscles and scar tissue, there are many benefits of seeing a pelvic floor physical therapist if you have Lichen Sclerosus.
When Should You Go See a Pelvic Floor Physical Therapist?
Ashley states the best practice is to have medical professionals working in conjunction with pelvic floor physical therapists. Thus, Ashely encourages you to at least get a pelvic floor physical therapist on your team early in your Lichen Sclerosus journey. If even you do not see them actively, at least they will be familiar with your case and there when/if you need them.
And, when choosing a pelvic floor physical therapist, be sure they are a good fit for you; make sure you trust and feel confident with them.
What Questions Should I Ask When Looking for a Pelvic Floor Physical Therapist?
1. Do they know what Lichen Sclerosus is? Ask them difficult questions about this!
2. Have they treated patients in the past with Lichen Sclerosus?
3. What courses have they taken? What level are they are with their education?
4. Ask what the evaluation might look like?
5. Ask what the clinical examination (internal and external) entails?
6. Can I bring someone with me?
Typical First Evaluation: A Walkthrough of your First Time From an Expert
In general, the first appointment is a lot of talking.
First, Ashley takes the patient’s whole health history and will ask a lot of questions. This includes questions about trauma to the pelvis or vagina, whether or not the patient has experienced sexual assault, etc. This is an important aspect of being a trauma-informed health practitioners; the answers to these questions will help Ashley provide the safest environment for you.
She also evaluates the body from head-toe to see if any musculoskeletal imbalances could be contributing to pelvic floor issues.
Second, Ashley asked the patient if they are comfortable with an outer and inter-vaginal examination. She explains exactly what this will entail, and that the patient can ask for a break or a full-stop at any point during the examination.
During the external examination, Ashely looks at and assesses the vulvar tissue. This involves looking at the color and texture. Further, she may palpate the vulvar area to check for any fibrotic tissue and scarring.
Ashley uses her finger and lubricant (no speculum or stirrups) to gently assess the pelvic floor muscles.
All of this provides Ashely with important feedback that will go into her personalized program for you. For example, the external exam might show a lot of fibrotic tissue, and the internal exam may reveal a lot of tension in the pelvic floor muscles.
Story-Time: A Lichen Sclerosus Success Story with Pelvic Floor Physical Therapy
One of Ashley’s patients came in unable to have penis-in-vagina sex. It caused her a lot of pain.
“Initially, she and her husband came to see me. He needed to be a part of her treatment team too. Initially, there was a lot of education about the nervous system.
We worked with gentle perineal massage in the beginning. Later, we progressed to me doing inter-vaginal assessments and massage with my finger and lubricant. Upon the insertion of my fingers, I noticed there were some tense muscles. Over time, with gentle massage and moving my finger along the fibers of the muscle, I could feel a reduction of tension.
Once we got to a point where my finger was benign, we worked slowly with vaginal trainers (AKA dilators).” During this period, Ashley would also focus on the mind-body connection and calming the nervous system.
Eventually, she progressed to sensate-focus graded integration towards penetrative sex. Now she has the best sex life she ever had with no pain!
Let’s Talk Vaginal Dilators/Trainers and Pelvic Floor Physical Therapy
Trainers are used to helping adapt muscles to be able to have functional penetrative activity, such as, for example, tampons, toys, penises, etc.
They are phallic and range from small to larger sizes.
Ashley recommends either Hope and Her or Intimate Rose for you dilators (links in the resources section below).
How to Use Your Trainers
- Get into a comfortable position. For example, lying on your back, propped up with pillows, in the bathtub, or whatever feels best for you.
- Minimize distractions and get into a relaxed state. For example, try playing calming music and dimming the lights.
- Ideally, find a pelvic floor physiotherapist to show you how to use your trainers first. Many components impact when and how trainers should be used, such as the level of scarring and fibrotic tissue, the intensity of pain, the degree of muscle tension, etc. Thus, seeing a professional, at least in the beginning is best.
- Begin with the smallest trainer and slowly progress to the largest over time.
Important Notes on #4
When using your trainer, make sure your pain is always 3/10 or less. Pain higher than a level three is picked up by the nervous system and coded as danger. Thus, a slow and steady approach is best.
Further, never go through more than three sizes at a time. For example, the first three trainers might go in fine without pain; this is great! However, instead of grabbing the fourth trainer, pause there and celebrate your progress instead. Next time, you can start at a bigger one than you started with last time.
Finally, if you insert the trainer and are met with resistance – it will feel as though you’ve contributeit a wall – do not push past it. Instead, met the resistance where it is at and simply hold the trainer there until the muscles slowly relax. If the muscles relax, continue sliding it in gently. However, if this resistance causes you pain higher than 3/10, remove the trainer and try again another time or discuss this with your pelvic floor physiotherapist.
Let’s Talk Lubricant!
Of course, we cannot talk about trainers without talking about lube! The key to success with pelvic floor physiotherapy and trainers is using lots of lubricant!
Ashley’s lube recommendations. There are so many options out there, but as a rule of thumb, stay away from lubricants with a long list of ingredients. Stick with good, clean lubricants.
1. Uberlube (water-based): Good if you have issues with dryness during intimacy.
2. Good Clean Love (water-based).
3. Dessert Harvest (water-based, also have a lubricant with lidocaine).
4. Slippery Stuff (water-based) – this is the lube Ashley uses at the clinic.
With timing, do not put the steroids on, and then do your dilators. The mixture of the medication and lubricant can reduce the efficacy of steroids. Do lubricants first, rinse off, and then follow up your medication.
Pelvic Floor Physical Therapy Screening Quiz: Is it Right for You
Ashely created a screening quiz to help you determine if you need a pelvic floor physiotherapist. The quiz will ask a bunch of yes/no questions such as, has your urine stream changed since having LS? Do you have pain with intimacy?
However, even if the results are no, Ashley recommends finding a pelvic floor physical therapist regardless, to at least have them as part of your medical team if you need them.
Virtual Pelvic Floor Physical Therapy, LS, and pregnancy
Assuming you get cleared by your doctor, Ashely recommends having pelvic floor physical therapy even while you are pregnant. They can do perineal body stretching which can also help with the delivery of the baby.
Thus, if you’ve torn in the past or have an episiotomy scar, they can gently stretch that area and make that tissue more extensible for delivery. Further, as you are pregnant, depending on your symptoms they can do inter-vaginal treatments as well.
In sum, if you have Lichen Sclerosus and do not have a pelvic floor physical therapist on your team, you might want to start looking into finding one. This amazing interview with Ashley has highlighted a number of reasons pelvic floor physical therapy is beneficial for those with LS.
For example, it can help gently break down scar tissue, reduce tension in the pelvic floor, increase blood flow to the vulvar/vaginal and pelvic regions, as well as help with pain during sex. Thus, if you are feeling like me – like I need to get on booking a pelvic floor physical therapist ASAP – bookmark this page for tips on what to ask when looking for a pelvic floor physical therapist.
I don’t know about you but I have learned so much!
Virtual Meetup Information
Did you learn anything new from this episode? Are you going to give pelvic floor physical therapy a try? Are you currently seeing a pelvic floor physical therapist? Let me know! Email me at Kathy@lssupport.net or DM me at @lichensclerosuspodcast on Instagram.
Better yet, why don't you tell us at our Lichen Sclerosus Support Virtual Meetup!
We meet every other Saturday from 2-4 pm and 7-9 pm Eastern Standard Time. This is your opportunity to share your diagnosis story, what is working for you and what isn’t, and ask the group questions. Perhaps share your experience with appointment anxiety! I have met so many incredibly strong LS warriors through these meetups, and I would love for you to join our community.
Sign up at lssupport.net/connect for notifications and updates! Our next meetup is on Nov. 13th – I cannot wait to see your face and hear your voice!
Check out our membership
Have you heard of the LS Warriors membership?
It's our private group where we learn how to tackle the mental and physical side of Lichen Sclerosus together. It's a positive safe place to get evidence-based information from people who understand what we're going through.
Find out more on our website. LS Warriors