*Disclaimer*

I am not a doctor or physical therapist. Everything I share is based on my experiences only. I am not giving medical advice, I am only sharing my story and providing resources so you are able to educate and empower yourself in order to be your own advocate.

My story is long, but I know the right people will find it and devour every detail. I used to spend night after night googling my symptoms, desperate to find anyone who had healed. That is MY WHY for creating this site. To give other women HOPE that they too, can heal.
 

My Diagnoses

Vulvodynia: It felt like there was a blow torch at my perineum constantly. Anything that touched that area hurt. Tampons were out of the question. Sex felt like a knife or sandpaper. It was maddening and constant. A very light Q-tip test would send me flying off the exam table. Even underwear or tight clothing hurt.

Pelvic Floor Dysfunction: Internal Stabbing, feeling of heaviness almost like my organs were coming out, a feeling of fullness. On OB exam everything “looked normal”. Stress incontinence. Painful sex. 

Symphysis Pubis Dysfunction: Sometimes my pubic bone was very tender, sometimes it wasn’t. But throughout treatment it became clear it was unstable and was a big problem for me. It would be unleveled at PT, and typically tender after sex. On exam, would tend to be lower on the right than the left. Appeared to have normal degree of separation on MRI 1 year postpartum, but still unstable.  

SI Joint Dysfunction: My lower back hurt constantly, but especially after a long day. I could also feel clicking, grinding, popping and a loose feeling at these joints. My sacrum would sometimes also be very tender and sitting for long periods of time was almost worse than moving around. 

Pelvic Instability: There was no imaging done for this diagnosis, it was all clinical. My pelvis would not stay put or in alignment.
 

Symptoms

• Burning, blow torch feeling at the perineum/vulvar area. Upon q-tip exam (where they barely swipe that area with a q-tip) I almost jumped off the table it hurt so badly.

• Stabbing internally from tight spasming pelvic floor and trigger points.

• Hip pain

• Lower back pain

• Tender pubic bone at times

• Very weak and painful/tight groins/adductors

• Lower abdomen pain (specifically RLQ for me)

• Eventually my knees and shoulders started hurting

• Painful sex (felt like a knife or sand paper)

• Could not tolerate tampons

• Standing too long or sitting caused extra pain

• Could barely lift my child

• Couldn’t roll over in bed bc it felt like my legs were going to detach at the groin

• Getting in and out of the car was hard

• Misaligned pelvis. Would be placed back into alignment at PT, but would never hold alignment,

• Popping, clicking, loose feeling throughout pelvis and lower back/ sacrum.

• Peeing when I laugh, sneeze, cough (I had had this issue long before pregnancy)

• Constipation, rectal prolapse, hemmorhoids

PARt II

REALIZATION + EDUCATION

Pregnancy/Postpartum

I had a normal healthy pregnancy. I played soccer my entire life including college and have always been an athlete and was moderately active in a very safe way throughout my pregnancy. I work full time doing anesthesia for surgery, so I am on my feet all day long as well. I was a very healthy, happy, active and a positive loving person.

After I had my son I was in a lot of pain. I am a small girl and had a baby just under 9 pounds with a large head. The nurses acted like I was being super dramatic when I was telling them my pain was so high and that pain medicine wasn’t helping. I had never had a baby before so I decided maybe I was being dramatic and quit telling them how bad I hurt. I went home and kept taking the pain meds around the clock with no relief. My hips were on fire, my pubic bone was tender, my lower abdomen hurt, and of course my vagina was not in a good place after that large boy had ripped through it, although I did not tear very bad.

Everyone just kept saying: “you’re a little girl that had a big baby, its going to hurt," so I believed them. After a couple of weeks, I started to feel this stabbing pain in my vagina.

I thought maybe it was my stitches. I went to my OB office 2 times before my 6 week appointment, but they just kept telling me everything was healing normally and looked good.

By the time I made it to my 6 week postpartum appointment, I was not in a good place. I was sobbing to the PA telling her my hips and lower back were constantly on fire, it felt like I was being stabbed in the vagina over and over and blow torched at the perineum, I couldn’t spread my legs apart anymore because my inner thigh muscles/ adductors were so painful and weak. I couldn’t walk up the stairs or get in and out of the car or bathtub, and holding my baby hurt.

She told me: “Your stitches healed well...some women live like this forever, it’s just all part of having a baby, resume normal activity.”

I wish so badly I had advocated for myself better at this appointment.

I had never seen this practitioner and I know my OB wouldn’t have blown my concerns off like this. I left sobbing and upset because if this is how my life was going to be forever, I didn’t know if I could keep going. I made an appointment with my general doctor the next day and he gave me some exercises to do that he would give someone with a hip labral tear. He basically said it’s only been 6 weeks, and he wasn’t an OB, so he didn’t really know what else to do and to give it more time.

For the following 6 weeks, I just tried to rest and slowly become active again, despite the pain. I started with some easy core strengthening exercises and walking and resting. I was still in a lot of pain, but powering through it because I thought this is just how it was going to be. Sex was still out of the question at this point because it still felt like a knife stabbing internally.

By the time I went back to work at 12 weeks postpartum, I didn’t even make it through 3 hours of my shift and I marched up to my OB office and told them I had to be seen. My hips and lower back were on fire to the point I almost felt numb, and the stabbing in my lady parts was relentless. Feeling like there is a knife in my vagina and a blow torch on my perineum 24-7 was about to send me into a full blown meltdown.

Being told multiple times by multiple people that “everything looked normal and had healed well” made me feel even crazier. At this appointment I was referred to a pelvic floor physical therapist.

At PT they found that my pubic bone was unstable/lower on the right, my pelvic floor was locked into a very tight state with lots of trigger points and spasming, and my pelvis was completely out of alignment, and my SI joints were stuck and not functioning properly.
 

Pelvic Floor Physical Therapy

Pelvic floor physical therapy (PFPT) is really amazing for postpartum women. I actually wished I had gone BEFORE I even got pregnant. The more I learned about the pelvic floor, the more I think I probably had some weakness issues with this before baby, that my body was able to compensate for until I had my son. PFPT included things like internal work (yes…a PT stuck their finger in my vagina and tested my strength… she also assessed each muscle and could tell where I was extremely tight and had trigger points. She would hold on the spots for a few minutes at a time to help release them.) I worked with dilators and a therawand at home as well to keep the tissues relaxed. The PT would also work on my tight muscles surrounding my pelvis with massage, e-stim, and dry needling. She also prescribed strengthening exercises once I was ready, and put me into pelvic alignment each week. I wore an SI joint belt for close to a year to try to keep me stable. In order to figure out my baseline pressure, my PT placed a tool internally that could measure how tight my pelvic floor was. I was locked at a level 9 (normal is around 2). Whether I was standing or laying down relaxing, my pelvic floor was constantly contracted, spasming, and painful. It would get better with physical therapy, but was never actually normal with PT alone. I also tried everything from acupuncture, ROLFING, anti-inflammatory diets, argivo technique, holistic pelvic care, twice a week massages, etc. I thought I had tried everything.

regenerative medicine

After a full year of pelvic floor PT (most weeks twice a week), my physical therapist could not figure out why I was not healing or staying in alignment. She had truly thrown everything at me to help me and she is very competent in her field. I remember my mom came to that appointment with me because we were so desperate for answers.

I had seen an orthopedic surgeon, my MRI looked pretty normal, and we couldn’t figure out why I was still in so much pain. My mom had done research on prolotherapy and asked my PT about it. She wasn’t very familiar with it, but at this point she had tried everything and suggested I look into it. I couldn’t find anyone close by to do prolotherapy on me so I started googling and decided to try Caring Medical in Chicago. I flew there on a Friday in December 2016 and met with Danielle Steilen PA. It was an amazing experience and she gave me hope.
 

Why Regenerative Medicine?

Since my pelvis was not staying in alignment, and I was experiencing issues with muscle tension, I was deemed a great candidate for regenerative medicine. The theory is: ligament laxity causes instability in the pelvis. If your ligaments are stretched out or weakened, your pelvis becomes unstable. Even if just in the slightest, your pelvis is the center of your body, and if it isn’t stable and in alignment there can be many other compensation issues that can occur. If your pelvis is unstable and the surrounding muscles are weak or off balance, then your muscles try to compensate and become tight, trying to hold you together. There is no test that I’m aware of to actually test if ligament laxity is your issue, its more of a process of elimination. Some people in some of the support groups I'm in have stated that it can be seen in some imaging.

Ligament Laxity = Instability/Misalignment = Tight Muscles = Nerve Compression = PAIN
 

HOW DOES REGENERATIVE MEDICINE WORK?

There are a few different ways to perform the injections. Prolotherapy and platelet rich plasma are the two types of injections I received. Prolotherapy is a dextrose solution that is injected at the ligament. It causes an inflammatory response signaling your body to send healing mediators to reheal the ligament stronger. Platelet rich plasma is where they actually draw blood from you, and spin the blood down into rich healing factors, then inject it in order to cause a similar healing process. Some places do lots of injections with no guidance. Some places do less injections and use an ultrasound. Caring medical did lots of injections unguided. I received prolotherapy and PRP to bilateral hips, pubic bone, SI joints, and pelvic floor area. I received a LOT of injections and bruised really badly afterward. I went to Caring Medical 3 times about 6-8 weeks apart for treatment. After the injections, there is an inflammatory phase that signals the body to come heal the ligament. For me this phase started 1-2 weeks after the treatment and it was brutal. The pain was almost worse than when I started. Even the 2nd and 3rd treatment, when I was expecting it to happen, it still made me question everything because I was in so much pain. The good news is that means its working. If you do decide to try these treatments come back and reread this section when you are going through your flare. The flare is a good thing even though it freaks you out. Trust the process. The flare equals healing.
 

When Did I Notice a Difference?

I started to feel a little better after my 2nd treatment and a LOT better after the 3rd. In fact, for a few months after my 3rd treatment I was almost pain free. All of my internal pelvic floor pain disappeared. The trigger points internally melted away. Sex was no longer painful, in fact it was better than ever. I could wear tampons. I started going on long walks and swimming and rebuilding strength with PT. Some of my muscles remained tight and my groins continued to bother me. I stopped going to PT for a few months and definitely overdid it with my activity, and in August 2017 all of my hip and SI joint/ lower back pain returned. The loose/clicking feeling came back and I returned to physical therapy. She was shocked at how tight my adductors were. My pelvis was back out of alignment, and my pubic bone was tender again. I thought I was going to lose it. I couldn’t believe I was back in this immense amount of pain.  (refer to the “emotional aspects of pain” to read more about this).

PARt III

FREE-ish AT LAST

another setback     

In September 2017 I learned of an osteopath in my city that was now performing regenerative medicine. I made an appointment with him and Im so glad I did. I saw him about 7 times for alignment adjustments and soft tissue work before he performed more injections on me. He used Regenexx,  super concentrated, amber PRP and tailored the strength of his PRP to the different areas of my body.

After reading about the Regenexx PRP, I do believe it is an amazing product. You will see discussion in forums about bloody PRP vs amber PRP. Some say it doesn’t matter, others say the amber PRP has more healing factors in it and is better. Also, he did his injections guided with ultrasound. It was a completely different experience than Caring Medical. He used a much smaller needle, didn’t inject me as many times since he was using ultrasound and knew exactly where he was going. I didn’t bruise hardly at all, and my flare about a week after the procedure was way worse. I remember being crouched in a ball on my bedroom floor sobbing wondering if I was ever going to be normal again.

A couple months after this procedure I was feeling SO MUCH BETTER. The popping and clicking and loose feelings in my hips and SI joints started to subside. My pelvis was holding in alignment again. I began working with a new PT that has been a complete God send. I am still working with her because this is the phase of my healing process where I continue to struggle.

As I was increasing activity, my muscles would tend to go back into their tight contracted state and begin to pull my pelvis back apart. My new PT would releasing all the tension each week and started me on strengthening my core and surrounding muscles to help hold me into place. Over time my muscles are relearned how to relax and stay that way. I finally became pain free, unless I overdo it, and when that happens she fixes me back up with cupping, myofascial release, dry needling, trigger point release or massage.

My current goals are to be able to carry another baby safely and with minimal pelvic pain. Regenerative medicine, along with finding the right PT saved my life.
 

How Much does it Cost?

The cost will 100% depend on where you go and how many areas you need treated. Some people had their treatments done way cheaper than I did. Unfortunately most regenerative medicine is not covered by insurance, but I do think some places are starting to cover it, that will be up to you to check into.

My husband and I actually sold our house and used some of that money to put towards treatments. My visits to Caring Medical averaged $2500-3000 depending on how many areas I had treated. The guided Regenexx treatment I had was $1500.

Quick TIP:

Check with your insurance to see if it can be covered.

Honestly, I could not even put a price on what these treatments did for my life. I literally couldn’t live in the amount of pain I was in so it was worth every single penny to me.

One of my goals for this site is to be able to sell things in my shop and take a portion of the proceeds to give women scholarships to try these treatments. This kind of pain is so debilitating and effects every area of a woman’s life, especially moms. I am so passionate in helping women get through this pain because I know how horrible it is.

Does the treatment hurt?

I took a Xanax before each treatment. The treatment at caring medical hurt some mainly because they seemed to have used a bigger needle and they injected me so many times. I also bruised pretty bad all over and had many pinpoint needle marks for a little over a week. I have read in some forums that their method is traumatizing. I will agree that it is brutal, but they are so nice there, make you feel really comfortable, and despite the pain I was always ready to go back. 

My regenexx treatment was under ultrasound and I really didn’t feel it. He used a much smaller needle and because he knew exactly where he was going with imaging he didn’t inject me near as many times. I didn’t bruise at all after this one, I was just tender in those areas for a couple days.

I honestly had great experiences both places. The staff at caring medical was so nice and made me feel very comfortable despite the discomfort of the procedure. My Regenexx Dr was also incredible.
 

What happens after the treatment?

After the treatment the injections signal your body to begin healing itself. The injections cause inflammation. I definitely felt these flares and they were pretty bad for me. It is important to tell yourself these flares are a good thing.
 

How long before you noticed a difference?

This is a tricky question because you don’t just wake up one day and feel healed (in my experience). The healing is very gradual. I felt a tiny bit better after my first treatment. About 50% better after my second treatment. And about 90% better after my third. After the third I was feeling so much better and my pelvis was so much more stable so I did not go back for more treatment, I was trying to save money and see if I could the rest of the way on my own. 
 

Why did you need a fourth round?

After my 3rd treatment I still had a lot of tight muscles and my PT at the time wasn’t able to address all of this as well as I needed. So although I was feeling so much better, I was still having pain flares after too much activity. The pain was mainly in my groins/adductors and the tighter they got I could feel my pubic bone becoming sore. Once my pubic bone became sore my SI joints and hips would start to hurt and it was all just a vicious cycle. They are all connected. Over the course of the next 5 months the tension in my muscles began to pull my pelvis back out of alignment and all of my hip, groin, lower abdomen and lower back pain returned. My pelvic floor pain did not return nearly as bad as it had been previously. (My last treatment was in Feb and I felt great April-August, but by Sept the pain returned and I felt unstable again.) Granted I was on my feet all day at work, doing a lot around the house, caring for a busy toddler, and working out on top of tight/weak muscles around my pelvis and down my legs that were never fully addressed. My pelvic floor pain didn’t necessarily recur, just the external pelvic pain. This is where I would tweak my healing process after the 4th set of injections.  I began to see an osteopath in Sept who performs Regenexx PRP. He manipulated me each week until November, when it was decided I would need another round. The flare from this round was crazy. I remember laying on the floor sobbing to my mom two weeks after the treatment thinking I was going to die from the pain. I am actually not being dramatic, it was intense. I don’t remember exactly when it got better, but I do know I had a follow up appointment with my doctor at around 5 weeks post-procedure and I was feeling much better and more stable at that time. I still needed my adductors addressed. After this round, I rested for 2 months and then began seeing a new PT that specializes in pelvic work (not internal pelvic floor but external). She began working on the tight muscles, tissue and fascia that had been so damaged for 2.5 years. The first few appointments were the most painful hours of my life as she has a very aggressive approach and worked the tissue hard. I would leave sore and bruised but also feeling way less trapped in my own body. She has been the KEY to me healing and staying pain free. The PRP 100% stabilizes me. I can tell a massive difference. But without her releasing all the tension and retraining my muscles surrounding my pelvis that it is finally okay for them to relax, I was previously getting pulled back apart. Once the muscles began to relax it was time to strengthen and this has been a whole other process.  A lot of my muscles (after years of instability) were full of scar tissue or completely turned off, causing other muscles to constantly be compensating and pulling me out of alignment. I found that my glutes were completely shut off. It's misleading because they appear to be strong, but I literally could not fire them. I currently go see my PT every single week as I progress my exercises. I was also having constant groin pain, which she somehow found was my femoral nerve acting up. She did some femoral nerve glides and the pain almost disappeared immediately. Finding a good PT has been a KEY adjunct to the regenerative medicine. Without her I believe I probably would’ve gotten tight again and pulled back apart. She has kept me moving, and helped me get strong the right away. This has not been an easy injury to figure out, and she has tried to help me to address every possible issue. A few months after my 4th round, I hurt myself again in the gym. I seriously thought I was going to need another round because everything felt unstable and super painful again. My PT was able to help me through this episode over the course of a few weeks, but it was really scary to me at the time. I have to be VERY careful in the gym.

HOW DID YOU FIND YOUR PT/WHAT TO LOOK FOR IN A PT?

I have been getting this question a lot lately and it is very hard to answer. I tried so many different practitioners that finding the right PT felt overwhelming. I didn’t find my current PT until I was a month out from my fourth round of PRP, and I know her skills are what got me the over the hump to healing. She is very aggressive, sometimes things felt worse before better, and I always feel sore afterwards. The only way I know how to describe how I found her is by God’s grace. I hit another rock bottom and He provided her through a friend. I was skeptical, and explaining my story to yet another professional was exhausting, but I am so thankful I didn’t give up and kept searching for the right person. If you haven’t seen any improvement in a couple months with your current PT, (AND YOU ARE BEING 100% COMPLIANT WITH WHAT THEY PRESCRIBE YOU…) I would say keep searching. People also ask me often, how soon is too soon to start PT after injections? That is completely up to you and your team. I have no way of knowing the extent of your injury or what you need. I gave my body about a month of rest before starting back into PT and that seemed to work for me. People also tend to ask how soon is too soon for injections. I am also not super qualified to answer that for anyone either. If you have stopped breastfeeding, and the relaxin hormone is out of your system, and you’ve tried conservative measures such as high quality pelvic PT for a few months with no improvement, maybe look into the injections and discuss with a team of professionals.
 

how are you now?

I consider myself 90% healed. Most days I am completely pain free. My pelvic floor dysfunction is almost completely healed. I have zero pain in that area and have been able to strengthen my pelvic floor. I am getting stronger everyday. My pelvis will stay in alignment most weeks now. I have worked VERY hard to address every possible tight muscle, weak muscle, and instability. I have definitely had setbacks. Most of the times my setbacks occur during ovulation or at the beginning of my period. The theory is the increase in relaxin production loosens my ligaments at these times of my cycle and I am much mores susceptible to injury. But I am also in the gym almost everyday working out instead of crying in my bed after work because I can’t function. SO I have improved so much, but am still working to manage symptoms every so often. I am very passionate about getting this information out to other women in hopes that they will also get their lives back.

THE EMOTIONAL SIDE OF CHRONIC PAIN

Chronic pain not only affects every area of your life, but it can become emotionally and physically damaging. There is a huge emotional component to not being able to live the life you used to live, to feel pain constantly, and especially to not know how to fix it or feel like anyone knows how to help you. I truly hit an emotional rock bottom about 1.5 years into my journey. I was working full-time do anesthesia, barely surviving my work days. I carry the insurance and am the bread winner for my family so I felt a pressure to keep going, but after work would come home and collapse in pain. I could hear my life being lived without me as my husband and son would be playing downstairs. I felt completely worthless to my family. I couldn’t have sex with my husband without pain, and that was a whole other situation we had to navigate together, even after I healed. Thank God for that man, who is so patient and selfless and loving. I couldn’t lift my son for 8 months, I felt like the most worthless mother in the world. I was afraid he wouldn’t even know I was his mom because so many people were having to help me with him. But I was determined to take the time I needed to heal myself while he was little, so he would hopefully not remember me like that. It felt selfish at the time spending so much time and money at appointments and away from my baby, but it was the best thing I could’ve done for my family’s future. Chronic pain tried to steal everything from me. We sold our house for extra money for treatments. It effected my mood, my self-confidence, made me questions my sanity, made me withdraw as a friend because it felt like no one could understand, and I truly felt so dark and worthless without a light at the end of the tunnel. The hardest part about it all was according to everyone else “I looked so good.” No one can physically “see” chronic pain. Physicians may have no idea what to do with you, so you end up feeling crazy, then questioning yourself. As you tell your story over and over to different providers, it becomes harder and harder. I got so sick of trying to explain my story, promising I wasn’t crazy, feeling crazy, and then just feeling exhausted and angry and wanting to give up. I gave myself seasons where I would allow myself to take a break from trying to heal and just let myself rest and be sad, but I absolutely did not let myself stay in that headspace long. I think it’s important in your journey to grieve, but also keep fighting. Healing is expensive, and so many holistic treatments aren’t covered by insurance. Pelvic pain is such a hard healing process as well because it is so complicated and connected to so many areas of the body and it can become this impossible puzzle that can drive you nuts, I truly honestly don’t know how i emotionally survived those years besides the fact that I had a good support, strong faith, and sheer determination that this couldn’t be my life forever. Even after healing, I struggled mentally and ended up going to a great mental therapist to deal with all the trauma. Living in that type of pain is traumatic. Feeling like healthcare had failed you is traumatic. I struggled with forgiving people who had blew me off. I struggled with the thought of this injury changing what I had envisioned for my family. This therapist validated every one of my feelings and helped me work through them. Healing mentally is just as important as healing physically because our bodies hold onto trauma. Chronic pain is so so hard. Give yourself breaks, allow yourself to grieve, but please don’t you dare give up.
 

***UPDATE****

I just wanted to give an update as I am now 20 weeks pregnant with a second baby. This was honestly something I never saw myself attempting to do again, but God had other plans for me. I was very strong before deciding to get pregnant again, working weekly still with my PT, and very rarely experiencing any pain at all. Now I am experiencing an active pregnancy. The first trimester I was super sick, so I didn’t do a whole lot, but now I am working hard to stay strong and safe. I am seeing my PT weekly still. I have had some right hip, right SI joint, and RLQ abdominal pain over the last few weeks. I have had very little pubic pain and am interested to see if that lasts as I grow. Most of my pain seems to be a result of a weak lumbar spine and obliques. My PT is using techniques such as dry needling and massage to release tension, which in turn is helping the pain. I am now wearing my Serola SI joint belt when I exercise. I am able to do things like the stair master, elliptical, and walks on the treadmill, as well as PT approved strengthening exercises focusing on the glutes, adductors, abductors, core, pelvic floor, scapular stabilizers, and lower back. My stress incontinence has definitely returned, but I am confident with good rehab I can fix this again. I am planning to do a c-section this time, and am hoping this will prevent further pelvic injury, but am also aware have your core cut through is not exactly fun either. I would covet your prayers as I continue this journey! Trying to keep updates on my instagram page as well as in the saved stories titled “PREGNANCY”.