FEMpowerment Fridays, episode 3

This week on FEMpowerment Friday, I want to highlight a new career I had previously not heard of: a pelvic health physical therapist. A few women had mentioned just how helpful working with this kind of PT was, and I had the absolute pleasure of connecting with Lacey Welch, PHPT and also the wonderwoman behind @underthewomanhood on Instagram.

Tbqh, I had NO idea what a pelvic health physical therapist was.

Here is how Lacey describes her background and experience:

“I have my doctor of physical therapy degree or DPT. I have taken intense additional courses (intense meaning, everything we do to patients, we have had performed on us in these courses – 25 women spread eagle on plinths, 25 women performing exams in a conference room. SO fun.) and clinical training to specialize in this area. With that training, we become competent with internal vaginal and rectal exams – locating pelvic floor musculature, nerves, and bony structures. I can treat male and female pelvic floor dysfunction, but am centering my social media platform on women.”
Here is the gamut of what PH PT’s can treat in women:
  • Sexual dysfunction: vaginismus, dyspareunia, vulvodynia
  • Bladder dysfunction: incontinence, urgency, frequency/”overactive bladder,” interstitial cystitis, painful bladder syndrome
  • Bowel dysfunction: constipation, IBS, anismus, colitis, diarrhea, incontinence
  • Pelvic pain (sometimes runs into abdominal pain): In addition to the subcategories in sexual dysfunction, we can treat other sources of pelvic pain – whether from scar tissue adhesions from surgery, endometriosis, PCOS, neural origin, coccydynia or structural pain from sacroiliac/lumbar/hip regions.
  • Pelvic organ prolapse
  • Infertility: I have no experience with treatment of infertility issues, but I know some PT’s out there do with positive research to back it up! Pretty cool.
  • Pre-natal pain: Anything from back/SIJ pain, to teaching them how to bear down properly in order to improve the ease of babe delivery!
  • Post-partum issues: Diastasis Recti, painful sex, pelvic organ prolapse, urinary/bowel incontinence, etc…
  • Post-mastectomy healing and other treatment of oncological complications: lymphedema management, regaining function, pain…I have limited experience in this area as well.
  • “I can treat pretty much anything that goes wrong downstairs. Meaning, sexual dysfunction, bladder and/or bowel issues, pelvic organ prolapse, pelvic pain (literally any pain, anywhere inside or outside the pelvis). I see women for impairments experienced during pregnancy and postpartum, which can include other body parts besides the pelvis, like abdominal muscle separation (diastasic recti). Some pelvic health PT’s can aid in the treatment of infertility issues, and impairments that are a result of cancer treatment, like lymphedema.”

1.  How did you first hear about this and what made you want to get into it (quite literally…)

Prior to physical therapy school, I worked as a PT tech in an outpatient clinic where I was privileged to be introduced to pelvic rehabilitation by a wonderful pelvic health physical therapist, who is now my friend and forever mentor. One of the first success stories I remember hearing from her sealed my pelvic health destiny and it goes like this:
After ten years of marriage, this particular patient and her husband had been unable to have sex due to the severe associated vaginal pain she experienced with penetration. As time went on, this couple desired to have children, but it was an impossibility to naturally conceive due to their inability to have intercourse. This physically and emotionally painful journey led them to seek assistance from a pelvic health physical therapist, who happened to be my friend. This patient received a thorough evaluation to determine the origin of pelvic floor dysfunction followed by individualized treatment. Within a matter of weeks, she and her spouse were able to have the long awaited pain-free sex (!!!) with the hope of conceiving a child (annnd my friend, the PT, received flowers from her patient’s husband). – Life. Changing. Niche decided.
2. What inspires you most about your job? 

Oh, man. So much really. Women often come to me when they are in their deepest valley – they have had a myriad of tests run, surgeries performed, or more often than that, they have been carrying this problem like a weight around their neck for years, too embarrassed to talk about it and seek help. Seriously breaks my heart. But when we start talking and I see their eyes light up, like there is some glimpse of hope to heal their situation, I get all the feels every time. And that’s only the beginning! Being able to watch the progress they make throughout their program, then seeing them leave the clinic for the last time as a different, more confident and happy person is truly priceless. I’m getting super mushy here… Long story short, this is the most emotionally rewarding career I could have imagined for myself.

3. Is there a particular success story that always makes you smile on particularly grey days? 

There are so many success stories that I reflect on from time to time, but here is one that is coming to mind now… Her diagnosis from the physician was interstitial cystitis (a very painful bladder syndrome) and pelvic pain, which had been going on for years. And by years, I mean 30+. She was a very sweet, but skeptical patient. Eye contact was fleeting and she had basically twisted her legs into a pretzel, I imagine to protect her vagina from me. I didn’t take offense. She had been run through the mill with tests, different medications, supplements, diet changes and so on. She refused an internal vaginal exam on the first visit, which many do (and even I recommend at times depending on the person and diagnosis). As I dug a little deeper into her pelvic health history, I discovered she wasn’t able to have intercourse with her husband due to vaginal pain, she strained with bowel movements, and revealed a significant amount of anxiety and obsession related to her condition. At her second visit, she tolerated a gentle internal vaginal examination (I don’t use a speculum or stirrups during my exam, only one finger), which allowed us to further develop a healthy plan of care for her impairments. Over the course of 3-4 months, there were mostly ups, and some downs, but throughout the process there was a beautiful transformation occurring. She was not only saying the word, “sex” while looking me in the eyeballs, she talked about enjoying it with her spouse after WAY too many years of it’s absence. She was leaning back in the chair with her arms and legs uncrossed (I imagine like Usher was at 7 o’clock in his drop top), bladder pain was a thing of the past, as well as, her engagement in medical-based chat rooms that perpetuated her anxiety. This was a confident, happy, healed woman. The smile that accompanies her story wraps all up around my soul.

4. How can women find PH PTs?

I usually recommend people visit the Section on Women’s Health of the APTA and click on the PT locator tab (http://www.womenshealthapta.org/pt-locator/). If the results return with no one, then I would try calling any PT clinic near you and ask specifically if they have, or know of, a pelvic health therapist who treats “______” (your impairment/diagnosis) either in their clinic or in your city.

5. Does it work for everyone? 

It absolutely works for more people than not. It really is a team effort, mainly between the client and therapist, but their physician as well (they must be supportive). The client must be motivated and compliant with the PT’s recommendations and home program, as well as, attending their appointments. The only time pelvic health PT may not have great outcomes, is if there is nerve damage contributing to a pelvic floor dysfunction – like a spinal cord injury or stroke. However, even with those diagnoses, there is usually some education or exercises we can implement to minimize the issue.6. Is it covered by insurance?

6. Does insurance cover it?

YES! If your insurance covers physical therapy, it will cover pelvic health rehab – at least that is true in the U.S. If not, there are normally options for self-pay and payment plans.

7. What population needs PH PTs most? 

That is a great question. I think the answer has to be postpartum mamas. There are so many things that happen over the course of pregnancy, through labor, then delivery (vaginal or cesarean), and once that babe is born we tend to forget about ourselves for a while. But while we are forgetting ourselves, there may be significant scar tissue forming from a vaginal tear/episiotomy or c-section, and/or a pelvic organ prolapse, which may result in painful sex, leaking pee and/or poo, abdominal pain, pelvic/back pain, etc. The impairments that can occur postpartum are serious business and need to be addressed asap! It would be amazing and SO beneficial if a visit to a pelvic health PT was a required part of the postpartum check-up, just like seeing your OBGYN (that is common practice in France).

8. What should a patient expect when seeing a PH PT for the first time? 

Every person and their symptoms are so different that I never treat two people the same. On the first visit, I take a very thorough history and, if evaluating a pelvic floor dysfunction, determine if an internal vaginal and/or rectal examination is necessary. I will also do a gross musculoskeletal assessment, looking at alignment, posture, strength, mobility, etc. From there, my treatment methods range from behavioral retraining, dietary education, biofeedback (training the pelvic floor muscles), soft tissue mobilization and other manual therapy techniques, and administration of a home exercise program/PT recommendations.

9. How long will it take to see results? 

This is tough to generalize because again, everyone is so different. However, I will say, if there are no hiccups along the way, people may begin to see positive changes around 6-8 weeks, sometimes earlier, sometimes later. It really depends on symptom severity and chronicity, as well as, compliance with our recommendations. I, along with the majority of pelvic health physical therapists I know, only see our patients 1-2 times per week at the most and that can continue until symptoms are resolved and/or insurance limitations arise – so that can be anywhere from 1 month to 6+ months. Don’t quote me on any of this if you happen to go see a pelvic health PT! We all have our own methods to our madness, but with the same goal in mind. 😉

To contact Lacey with more questions, you can find her on Instagram as @underthewomanhood or shoot her an email: underthewomanhood@gmail.com


Okay now on to part 2: YOUR STORIES!!

  1. Way back around the time of puberty, like every other girl, I got my first period. For the most part, everything seemed normal, but for the life of me I could not seem to figure out how to use a tampon. I tried and failed many many times. My poor mother was puzzled by my insisting to her that it just wouldn’t fit. I can only remember one occasion during my teenage years in which I semi successfully inserted a tampon. By semi successfully I mean it was likely not even halfway in but so incredibly painful. Eventually I decided that it really wasn’t worth the effort for me. Fast forward to college. When I was young, I made the very personal decision to save sex for marriage. I hardly any relationships worth noting before college, so it really wasn’t difficult. College was very different though. Not only was I in several serious relationships which made not waiting more tempting, but there was also so much pressure that I never expected. I had people saying “don’t you wish you had experienced more by this time in your life?” Many guys were not even open to the idea, and I was dumped a good handful of times because I didn’t “put out” and “a guy’s got needs.” Eventually I landed myself in serious relationship with someone who felt like the right person and managed to rationalize away my childhood vow. We tried, and it was terrible. Just like trying to force a tampon into my body, it was like hitting a excruciatingly painful brick wall. After several other attempts, I had had enough and chalked up my reaction to my body protecting me from doing something that I truly did not want. Sometime over the span of the next  year or so, I watched an MTV show called “True Life: I can’t have sex.” A woman on the show with a condition called “Vaginismus” had eerily similar symptoms to myself. I decided that just to play it safe, maybe I should see a doctor. 

    So I did. I met with a gynecologist and explained my experiences and how they seemed similar to Vaginismus, but I thought I should leave it to the expert. Her response was “vaginismus?? I think I’ve heard of that. What do you even do for that?” To say I was mildly terrified is an understatement because apparently the “expert” had no idea what I was even talking about. She performed an exam which essentially consisted of her barely getting her finger tip inside of me and I was already crawling up the table in the pain. “It’s just your hymen.” She insisted. “We’ll just take it out.”

    A few weeks later, I had a short surgical procedure to remove my hymen. All went well, and I was feeling hopeful that my problems were and easy fix. At my follow up appointment to check how I was healing, the exam was so painful, just as it was before. Afterwards, as she was explaining to me that it may just be painful because I was still healing, I had to stop her in mid sentence because I was about to faint. 

    2 months later, as a 22 year old woman, I inserted a tampon successfully for the very first time. It was a tiny one, and I wouldn’t exactly call it comfortable, but it was still in and I was overjoyed.

    One year later I had my annual exam with the same gynecologist. To my surprise and devastation, the exam was just as painful as before. I will never forget the horrified look on the poor nurses face as I was yet again crying and climbing up the table like I was being subjected to some type of torture. The formerly kind and understanding gynecologist stated “next time we have to do a PAP, so have a glass of wine or something before you come.” I never went back.

    Around the same time I was struggling with some sharp pains in my lower back and ovary area, which was eventually diagnosed and as a large ovarian cyst by my family doctor. These became pretty common for me and I was later diagnosed with PCOS. With PCOS, comes many tests and ultrasounds. On one occasion, I was ordered a trans-vaginal ultrasound to check for a cyst. It was like deja vu as this poor ultrasound tech was trying to shove a seemingly giant probe into me and I was yet again crawling up the table. I swear it was by God’s grace alone that somehow she successfully got it in. After that, I was feeling more hopeful than ever to someday have a normal sex life. At the time, I was dating my now husband. Fully knowing my history of issues, we still had made the decision together to save sex for marriage. I remember coming home after that ultrasound and announcing to him that if I had survived that, sex would be totally possible for us someday. 

    My husband and I were married in March of 2016 and the happiest day of our lives quickly became and evening that I wish I could forget. What was supposed to be an intimately beautiful moment between us felt like literal fire and knives inside of me. We tried, and tried, and tried, and just couldn’t. Through a waterfall of tears from both parties, he told me not to hate myself, and I promised him that I didn’t, but inside I did. I was heartbroken. 

    So what now? A doctor already insisted that she “cured” me, so where do we go from here?

    I spent many days frantically searching the internet for answers. I kept reading about Vaginismus and how dialators have seemed to help many women struggling with the same issues, so I ordered a set along with a book and hoped for the best. 

    A few months later, at one of my appointments with the family doctor, we were discussing more of my PCOS symptoms and regulating my periods, etc, when she asked me if I ever have any pain with intercourse? Surprise surprise, I again I start crying in the doctors office, but this time I felt like someone was actually hearing me. I explained everything that I was experiencing and how my husband and I have been unable to have sex.  She referred me to a pelvic floor physical therapist.

    I met my physical therapist at my first appointment 2 weeks later. This woman is an angel on earth. For the first time in my life I felt understood, heard, and not crazy. 

    She has taught me so much about my body. It is not all in my head. I do not need to have a glass of wine and just calm down. 

    When you get poked in the eye, your body’s natural reaction is to blink in order to protect you. My vagina does essentially the same thing. My muscles are contracting involuntarily during any attempt at penetration, which is what is causing me such excruciating pain. 

    After 7 months of weekly physical therapy appointments and daily exercises on my own with my dialators, I have made a ton of progress, but some days still seem like I have a ton to go.

    I am doing my best to embrace the fact that this is very much a journey, and not a race. Just when I think we are almost through it, my body takes a few steps backward, and that is okay. There are many days where I throw myself a pity party because I just want to be normal. My husband and I’s first anniversary was one of those times. Still being physically unable to consummate our marriage after over a year has been difficult and heartbreaking. Before we knew just how prolonged and emotional this struggle would be for us, my husband had the phrase “worth the wait” engraved on the inside of my wedding band. Those 3 little words wrapped around my finger serve as a daily reminder that in the grand scheme of time, this period of waiting will only strengthen our bond. 

    One month ago, on my birthday, I got the phone call from my PT office that my health insurance company had denied me any further coverage as they do not see it to be medically necessary. I was devastated. These appointments are not cheap to say the least, and we are not exactly in a financial position to put forth a monthly payment that is more than our mortgage towards my treatment. Thankfully, my angel on earth of a physical therapist fought for me and I was granted 4 more visits, but that is likely the best we can do. My last appointment is coming up next week, and after that, I don’t know if and how this story ends. 

    Yesterday I met with a new gynecologist who was recommended to me by my PT. We talked about some additional options we may have. These other options are scary, expensive, and some even risky, so I have some thinking to do. 

    I realize that was basically a novel of a story, but I think it is an important one to tell. I may have been given quite possibly one of the most intimate, vulnerable, and “taboo” stories but I know that many other women can relate. Vaginismus and other pelvic floor conditions come with a lot of loneliness, shame, and misunderstanding. I have struggled to find the emotional support that I need because when I do share my heart, it is often not well received. Many people are taken aback to hear the details about such a personal topic, or they have never heard of such a thing and aren’t sure what to say. I have received more suggestions than I can count about methods to help me to “just relax” and let it happen. These people often have great intentions, but truly do not understand the depth of my struggle. 

    If I can offer just one woman some comfort in knowing that she is not alone and there is hope, then being completely vulnerable is worth it to me. My ultimate goal (which is likely aiming pretty high) would be to start some type of organization which provides resources to women with pelvic floor issues (and their significant others) to get the help that they need, whether that be emotional, financial, or just to be pointed in the right direction. More than anything I would love to connect women with these struggles to other women who are fighting the same battle. There are a few forums online that do this, but I strongly believe that there is so much empowerment in getting off of google and getting in the same room with someone who can genuinely relate to your experiences. -Casey

  2. It took me from the age of 13 to until I was 20 to be diagnosed with PCOS.  During the ages of 13-15, I had acquired a lot of weight suddenly and no menstrual cycle. When visiting my old practitioner, it was wrote off as being a teenager and being put on birth control.   I took the birth control as it was encouraged by my mother, and found I was cantankerous as ever, so I stopped the medication.

    At the age of 20, my mother ended up forcing me to confess that I wasn’t having periods still. Once again, I was back at the same practitioner, who then assumed I had some reproductive problem. I was scheduled for an ultrasound which revealed I had cysts on my ovaries and some blood work. My blood work came back with my hormones being abnormal and I was referred to an endocrinologist.

    After my visit to the endocrinologist, I received a phone call stating I needed to follow up in 6 months and taking Metformin and Spironolactone. It was never explained to me what these medications were doing.  Because of the side effects of the medication, once again, I discontinued it.

    7 years passed and I continued to gain weight until I was 230 pounds. A lot of my diet consisted of pizza, fast food, soda, and anything that could come from a bag. I’m not exactly what caused me to seize the moment of trying to adult, but I scheduled an appointment with a new practitioner for a physical. During this physical, I told her I was diagnosed with PCOS and never treated it properly. Unlike previous practitioners, she took the time to understand what my body was doing by ordering blood test, and then when I received the results – it was explained what my body was doing and why I would be taking these medications.  I was insulin resistant, high testosterone, high cholesterol, and pre-diabetic. I followed up with her every month until we regulated my insulin and testosterone.

    Little did I know that the next 3 years of taking metformin and spironolactone my life would be changed. Each visit I continued to lose weight, and was encouraged to eat a healthy diet and exercise. The encouragement also came in a form of ‘these aren’t necessary medications to take forever, it’s assisting you to get where you need to be – but it’s on you to do the right’

    A few months ago my husband introduced me to Rhonda Patrick. Rhonda is a biomedical scientist whose interest is in cancer, aging, gut health, metabolism, and inflammation. (http://www.foundmyfitness)  After watching her YouTube videos on how diet affects your genetics, and eating certain foods has been shown to cause a certain affect in the body – I couldn’t argue the research.

    Gut health became so important at that moment. I gave up refined sugars, simple carbs, and started eating salmon three times a week. I have some sort of leafy green with every meal, a huge variety of fruits and veggies. I made a priority to add exercise into the mix – I do a mix of HIIT, strength training, and cardio five times a week, and yoga two other times.

    I just recently visited my doctor a few weeks ago to follow up on my medications (which I haven’t been faithful to take). It was determined I’ve lost 65 pounds in the course of 3 years and after doing blood work – I am free to stop taking the medications because I’m no longer pre-diabetic, insulin resistant, or high cholesterol. I no longer display the symptoms of PCOS.

    I managed what I was always thought wasn’t possible. I always thought I would be on metformin and spironolactone because the endocrinologist made me believe the only way to manage it was through medication. I am forever grateful for the encouragement I received from my practitioner to exercise and eat better instead of just prescribing and walking out the door like in the past.  For those with PCOS – you are in control of your health. There isn’t a formula for progression – it may take years to figure out what you are working towards and why, and no, you won’t always be perfect – but you can always make the better choice. Some days you won’t make the better choice, but your body will be sure to let you know it – and that may be enough reasons to reconsider the next time a choice comes around. 🙂 -Miranda

  3. My women’s health issue it a little different than some of the others and actually involves postpartum issues, but still women’s health issues. 2 years ago, I was an extremely fit mother of 3 little girls. I was lifting, running, doing yoga and was in the best shape of my life. In January of 2015 I found out I was pregnant with baby #4, a little boy!  I was elated. But just 11 weeks in, I was in the emergency room with bleeding and was told I had a uterine hemorrhage. I was put on bed rest and remained terrified the next 29 weeks that at any moment something would go wrong. My dr performed multiple ultrasounds to make sure everything was still okay. I’m happy to say that on September 29, 2015 my son was born via csection. And this is where my horror story begins. This was my third c section, with the first two going relatively smooth. With the first 2, I was up and moving the day of surgery, feeling almost fully recovered by week 2. With my son, I was pushed out of the hospital a day early to make room for other expecting moms. After such an intense operation, I didn’t feel ready to go home. I could barely walk or move, but felt as though I had no other option. After I got home, I couldn’t use the bathroom.  During surgery, my bladder had been nicked and I was left with incredibly painful bladder spasms that made it impossible to pee. 3 weeks after surgery, I was still in unbearable pain and was still bleeding. I called the doctor and they advised me to come in, as bright red blood at this stage of the game was not normal. I went in, only to be seen by a different doctor who decided that this was the prime opportunity to perform an exam. With a speculum forcefully opened and hard pushing on my uterus, I screamed in pain. “It’s just pressure” she said. No. It was more than pressure. It was excruciating and I cried for days following. My regular doctor called me 2 days later to tell me to come in the office. I came back and she informed me that somehow, I had managed to contact a surgical infection from tissue being accidentally transferred to my uterus during the operation and I needed to start strong antibiotics quickly. This explained the severe pain I felt during the exam that was pushed aside by the other dr. After two rounds of the antibiotics, the infection and bleeding subsided. I thought my problems were over. But I quickly realized that I wasn’t healing correctly. I couldn’t lean against anything because the scar tissue around my incision was so painful. Yoga pants hurt. Sitting hurt. For months, I couldn’t move. On top of that, I couldn’t stand up once I bent over to pick up my son. I was locked in a bent position until someone helped me stand back up. I had no feeling in my pelvic muscles and couldn’t do a keagle if I wanted to. It was as if everything forgot how to function. I couldn’t use the bathroom without a supplement to assist in the fact that my bowels had stopped working. One day, on a Pinterest search, I came across “Diastasis Recti” a condition in which your an muscles split down the middle, leaving you susceptible to incredible damage. I decided to try the DIY test and see if this is what was going on. Indeed, I had a gap more than 4 fingers wide. I went back to my ob/gyn to get an evaluation for DR so that I could hopefully begin physical therapy. Without feeling at all, she said, “if you had it, you would see it while standing, and we can’t. You’re fine.”  I left the doctors office in tears.  The Doctors priorities now were with the other pregnant women and the postpartum women were pushed aside. Determined to find a way to get some quality of life back, I found a new primary and had him check me for Diastasis Recti. Within 2 seconds, he had written me a referral for physical therapy. I finally felt like I was getting somewhere now. I began physical therapy and at first couldn’t engage any muscles in my stomach. They had forgotten how to respond. My diastasis stretched from my pubic bone all the way to my sternum, 4 fingers wide at my belly button. Within a month of physical therapy, i regained all muscle control back and closed the top and bottom of my diastasis, and dropped down to 2 fingers wide at my belly button. My physical therapist also did scar massage, and after the first session (which was incredible painful) my scar adhesions released and I could now bend, twist and lean against anything with no pain. She saved me. She gave me my life back. I think stories like this are important because often, postpartum issues aren’t given the light they deserve. These are serious and debilitating issues. Women shouldn’t be pushed aside after having a baby. I think it’s important to shed light on the issues and the fact that women need more education as to what can happen AFTER that baby comes. We’re all told what to expect during labor and immediately following, but we’re never told what can happen the first week postpartum going forward. We need more education and attention, not a push out the door.@gypsyheart.wanderlustsoul
  4. My periods have never been regular.  Ever.  First and foremost I got my period at the age of 10.  Back in the early 90s, my doctor didn’t seemed concerned in the least.  It wasn’t until a couple years later that my mom took me to her gynecologist because I was getting my cycle twice a month.  Instead of running blood work and doing an ultrasound they told my mom it would be best to put me on birth control.  I went on it very briefly at the age of 14 and told my mom how much I hated it and stopped shortly after that.  After I went off the pill my cycles resumed their old crazy ways.Fast forward to the age of 27.  I had been married for two years at this point when my husband and I decided to start trying for a baby.  Knowing my cycles weren’t “text book” I sought help sooner rather than later.  Looking back I wish I had asked to see a Reproductive Endocrinologist (RE) vs. seeking help from my OB/GYN.  While OB/GYNs can be extremely helpful and knowledgeable in many areas hormones isn’t one of them.  I’m sure someone might disagree with me on this.  While under the care of my OB/GYN they ran blood work and said I wasn’t ovulating.  They prescribed me Clomid and sent me on my way.  No monitoring was done.  Again, looking back I wish I knew what I know now.  After three unsuccessful cycles they sent me to a Reproductive Endocrinologist.The first doctor we saw listened to my history, ran some blood work, and called us to talk in his office.  He told me I have what’s called Premature Ovarian Failure (POF) … basically Premature Menopause.  He said there’s only 1% of women that deal with this and that my chance of getting pregnant with my own eggs or even with assisted reproductive treatment was 5%  I remember bawling in his office while he told my husband I should seek therapy.  He also told me that in order to start a family I better look into adoption or egg donation (using another females egg and fertilizing it with my husband’s sperm)  I had just turned 28 and was beyond devastated.  I sunk into a deep dark place for a while after this, but eventually I put my big girl panties back on and sought a second opinion.The second RE we saw was amazing.  While he agreed with the first doctor’s diagnosis, he also told me that I was still young and most importantly still getting my period.  He said he was willing to help us out in any way he could so that we’d feel like we gave it our all.  In the meantime, I researched like crazy.  I learned everything I could about POF.  What exactly was it?  Were there any success stories out there?  What causes it?Throughout my research, I learned my mom went through menopause at the age of 42 and so did my Nan.  I had all sorts of tests run to see if there was another factor playing a role (thyroid, chromosome defects, etc)  Everything came back fine.  I also found great news.  There were so many success stories out there and I was determined to be one of them.  I found that acupuncture helped tremendously.  I also found that most acupuncturist recommended removing wheat/gluten, dairy, and sugar from your diet.  This seemed like a tall order to fulfill, but I was willing to try anything.  Another thing that I did all these years ago was toss all my plastic containers and water bottles.  I also went 100% organic and non-gmo.I started acupuncture in January 2010 and also began my new way of life diet wise.  I consistently went to acupuncture once a week.  In April 2010, we were able to try our first IUI.  Unfortunately it didn’t take.  The following month my doctor wanted me to relax and refocus to try again in June 2010, but low and behold, that wouldn’t be necessary.  We had conceived on our own in May 2010 and I gave birth to our daughter in January 2011.Since having her my hormones have been a wreck.  I sometimes find myself slipping and reverting back to old eating habits.  When that happens my period disappears.  When I get back on track my period comes back.  If you had told me prior to all this that diet can play a role in your hormones, I would’ve said you’re crazy.  Total believer now.Best wishes,
  5. I had been on ‘the pill’ for 2 years and developed eczema right away and recently had a bout of painful, swollen joints. It really worried me so I found a functional medicine NP (credentialed with IFM) and I’m on a whole new regimen. Copper IUD and bioidentical  progesterone along with a few vitamins and supplements plus real, healthy foods and yoga.Anyway, 2 points to share…1. Some providers may recommend a hormonal IUD in place of the pill but this may not really solve the potential hormonal imbalance in many women who are just put on the pill for various ailments such as irregular period, heavy bleeding, etc.

    2. Bioidentical hormones are not just for menopausal women! I myself was skeptical and I’m disappointed that my education did not provide me enough on women’s health. The bioidentical progesterone has been HUGE for me and my cycle is normal since stopping the pill and getting the copper IUD. Progesterone is often forgotten and most attention is on estrogen as a female hormone.

    This has been so huge for me and I couldn’t not share! It’s so ironic that you have been discussing this as this is something I have done in the last 2 months. -Lauren

  6. At 18 years old, I have never had a period on my own. At the age of 13, I had spotting, but began club volleyball and competitive cross country. This intense exercise led to weight loss due to inadequate calorie consumption. By the time I realized that my weight was becoming dangerously low, it was too late. I did not have a period and my doctors were convinced I was anorexic. I denied the claims, because I simply wanted to play the sports I loved and eat healthy to fuel my performance. I just wasn’t eating enough. Despite my insistence that I did not have an eating disorder, my parents and doctors believed I was anorexic and I felt torn. I could sense their distrust. I still wanted to run because I love it, despite the effects on my body. With time, I gained weight, but did not have a period. I also decreased my activity levels, quitting all sports except cross country, which was still a fair amount of exercise. At 17, my doctor advised birth control pills to supplement my body with estrogen to strengthen my bones. I took the pills for 6 months, but did not like that I was putting a band-aid over the problem and not curing it. I also did not like the side effects of the pills, particularly the moodiness I felt whenever I took them. Thus, I stopped taking them and am trying to balance my hormones naturally. It has been 4 months since I stopped and though I have had cramping every month during the time I should have a period, I have had no period. My doctors and parents now understand I wasn’t anorexic; I was just trying to fuel my body well, although it wasn’t enough. Thus, our relationship has mended and we understand each other better. However, I am worried I won’t have a period. My estrogen levels are low as well. I do not want to go back on the pill. I want to keep running and fueling my body with nutritious foods that make me feel good. With the stress of school, I have unintentionally lost weight as well, which has exacerbated the problem. I hope in the future, my hormones will become balanced and I will be able to continue doing the things I love while being healthy and having a period. Until then, here’s to hoping and trying my best to stay at a healthy weight.” –@rithikapro
  7. Hi, lovely humans! My name is Emily Gray and I am a 21 year old “superhero”, as I like to joke with myself. Here’s my medical background. I was never sick growing up, but I’ve never had my menstrual cycle (yes, at the age of 21 and it’s a scary thing). I also have Endometriosis, Interstitial Cystitis, and Gastroparesis (which is where your stomach is paralyzed and can’t digest food or goes on vacation,) as I like to call it. I also was diagnosed with a rare, multi-systemic autoimmune disorder at the age of 17 called Behcet’s Disease. Don’t worry if you don’t know what it is, 9/10 of my doctors never did before me either. Like I said, it’s multi-systemic and also vascular, so anywhere blood flows, I have problems. My main problems consist of recurrent mouth ulcers (50+ at one time), vaginal ulcers, eye ulcers with recurrent optic neuritis, skin lesions (except I somehow skipped over that one) and Rheumatoid Arthritis of all of my major joints. This doesn’t include all of my everyday symptoms or little quirks like Reynaud’s Phenomenon, where if I get cold, I lose all of the pigmentation in my digits like fingers and toes. That’s a lot, I know, and I’m only going to hit on the Amenorrhea and Endometriosis. Thankfully, I’ve found ways to heal myself naturally and live the best life with an ever evolving love for health and wellness.

    To get to the good, you have to have some bad like everything in life. As I mentioned, I was never sick growing up and I was a 16 year old that hadn’t started her cycle yet, so I went to the Gynecologist like recommended. I remember having the most awful cramps, or so I thought at the time. I wouldn’t be able to get out of bed, I’d pass out from pain and I’d spend countless hours lying on the bathroom floor because I didn’t have the energy to get up and down from throwing up. At the time, I was 90 pounds, so the lack of my period was attributed to not enough body fat. I was given medication twice to try and induce a period, it never happened. Following that, I was put on birth control to help control my symptoms. I honestly never gave it any thought because I was SIXTEEN, in an immense amount of pain and that was the only option given to me. I started the pills; they didn’t help with my symptoms and caused me to throw up at the same time every day because I didn’t weigh enough. We tried a few more different brands of the pill, the Depo-Provera and the Skyla IUD. I was a catastrophic mess. My gynecologist had no explanation for me other than Endometriosis, which was diagnosed based off of symptoms because she didn’t want to do surgery and create any scar tissue. We had the conversation about how some people only had a few spots and experienced tons of symptoms and vice versa. I was told that the surgery she wouldn’t do was the only way to confirm.

    To think things couldn’t get worse, I went through several months of struggling to be diagnosed with my rare autoimmune disorder. I spent the majority of my time at the ER, at doctor’s appointments or inpatient at Nationwide Children’s Hospital. I’d say I missed out on 75% of my senior year. Of course, all of my female issues got put on the back burner. While this was going on, the intensity of the pain exasperated so much, my Gynecologist recommended me going on the Lupron Injection, which medically puts you into menopause. Big mistake, but I needed it to stop. I was a psycho, hormonal teenager that was in a lot of pain and going through multiple new diagnoses, plus some scary medications. I was also on high dose steroids for a course of 18 months, a TNF Blocker and Chemotherapy. I mentioned I was 90 pounds? Yeah, I gained probably close to 35 pounds while being on the steroids and I still didn’t get my period so it wasn’t a weight issue. I was definitely fat for a while, but the majority has come off and I’m learning to love my body for what it’s gone through.

    About 2 years go by and I’m still dealing with the chronic pelvic pain. No period. My ovaries swell up to the size of golf balls and you’d think I was starring in an Exorcism movie when the pain was bad, which wound up being every day. I got zero relief and went days with no sleep. I ended up seeing a gynecologist at Children’s who wanted to do exploratory surgery to see if I truly had Endometriosis. I did. She placed a new IUD and recommended going on the Lupron again, as well as a Progesterone and Estrogen pill. That means I was on four birth controls. This round of Lupron ended up being the worst. I stopped halfway through because I couldn’t stand the person I had become. I went through so many mood and behavior changes it was scary. I was referred to Cleveland Clinic by my Rheumatologist where they recommended not getting the Hysterectomy I begged for because my pain wouldn’t go away and to get a pacemaker placed in my pelvis, instead, with anesthesia blockers injected in my pelvis. Unfortunately, nobody in Columbus, Ohio would go through with this and be able to keep up with it. I also recently went to the Gynecologist and was completely astonished. I explained everything that was going on and my concerns, only to be asked if I wanted to go on birth control AGAIN. I kindly said that I didn’t want to, but wanted to go through with the Intravaginal Pelvic Floor Therapy. It stunned her, but she said it would probably be a good idea since I did so well with the alternative therapies and that she never would have thought about offering it. I also told her I was tired of covering my issues up and just wanted to know how and why things were happening. I’m 21, so of course I want to feel better and have kids one day. I didn’t get anywhere, but that’s no reason to stop trying at finding answers.

    Back to about 2 years ago, I felt stuck. I felt completely failed by Western Medicine, so I ventured into Eastern Medicine and Alternative Therapies, learning as I went. I started out with herbs, juicing at home, essential oils and Osteopathic Manipulation Therapy (OMT). OMT did WONDERS for me. I would go 2x a week and be manipulated/worked on by the doctor, sometimes 2 I was that messed up. They would work on my Pelvic Floor from the outside, practically grab my uterus from the outside and massage it or put tons of pressure on it. They’d work on all of these different pressure points and do crazy manipulations. I would walk out of there being able to breathe and got about 1-2 days of relief. It eventually lasted longer and I could get relief for up to 3 days. I did more research because this was not normal and I just wanted to feel better. I was introduced to a line called Plexus, which is a brand of vitamins and supplements. The lady that talked to me about it, also had an autoimmune disorder, and was off of all of her medication and in remission. I remember thinking that I had such a rare case and it wouldn’t help. I ended up starting off with their Triplex combo consisting of a probiotic, a biocleanse and a daily drink that helps to balance your blood sugar levels. With this group of three supplements, everything was treated at the gut. I no joke took this religiously for a month and could not believe the difference it made in my body. I could run, I had energy and was sleeping. I wasn’t in near as much pain, but still had some work to do. I also started up with the Pain Clinic at Children’s, which consisted of seeing an acupuncturist religiously; massage therapist, physical therapist, psychologist and a pain doctor. I did this weekly for about 6 months and appointments for that day were usually an 8 hour day. This opened so many doors for me. I was so grateful to be offered something other than pain medication or birth control being shoved down my throat. Yes, they did prescribe me pain medicine for a while, but the combination of everything is what did the trick. I eventually weaned off of it and was surprised to not feel pain 24/7. It wasn’t just one thing. They taught me how to manage my pain so I COULD do something about it and could work at healing my body. The pain medicine helped me sleep and get through bad days or Physical Therapy if I had it that day. The acupuncture helped relax me, get things moving and treating the illness head on. I also loved acupuncture because when I would go, I never had to explain myself or how I was feeling. She would look at my body for different signs and take my pulse in several places and got way more out of how I was feeling that way than I could describe. The Physical Therapy helped me to use my muscles, including the most important one. My brain! I always told my PT Trainer he was crazy and it wouldn’t help. It actually did, though, because it forces your “medicine box” in your brain to actually utilize the medications and put them to work. Same thing goes for vitamins, herbs, adaptogens and supplements. The more you work your brain, the more they work. Working with a Psychologist helped me to relay how I felt and she also taught me Biofeedback where we learned how to get my heartrate down from 250 to low 100s. She helped me with resources and got me into yoga for relaxation and time for myself. Side Note: I also got a puppy and that made things 100x better.

    I’ve dabbled in things like Essential Oils for years, but my education and love for alternative ways of healing just keeps growing. I recently got into adaptogens mainly because my hormones are as balanced as a teeter totter. I was actually diagnosed with Primary Adrenal Insufficiency, which isn’t as common or likely as Secondary AI. My doctors were pretty shocked. Since being on the adaptogens, I have had one tiny period, it lasted about 2.5 days. I got it at work and cried and cried and cried because I was so happy. I’m hoping it wasn’t just a fluke and all of my hard work is finally paying off. I recently started up with the Intravaginal Pelvic Floor Therapy and I’ll do that once a week for several months. So far I like it and have already gotten some relief. I can’t wait to learn more about it! I don’t have a specific diet; I just listen to my body. I try and eat as natural and whole as possible and oh my gosh, they are not lying when they say “Food is the best Medicine”. I could never eat well before because I either didn’t eat for days because I was exhausted and in too much pain, or just grabbed what was convenient. I do eat “junk” food every once in a while, but my body picks up on it instantly and goes into shock, where I’m left feeling miserable. Certain foods affect my ovaries and hormones more than others. Coffee, sugar and preservatives are big ones for me; which sucks when you grew up on coffee and have the biggest sweet tooth ever. I’m slowly, but surely getting into this whole eating for your body thing, though. I do realize that you can easily eat healthy and not deprive yourself and I do realize that not everyone has the same body which requires different fulfillments. As crazy as it sounds, working out makes me feel better. I don’t do anything crazy, but it makes me feel so good and I love giving my body what it needs. I don’t think people truly realize how easy it is to make changes to enhance your quality of life. I went from working 60-70 hour work weeks as a PCA to working 32 hours as a Front Desk Registrar for Children’s Outpatient Clinics. I have time to treat my body the way it deserves and it loves me right back. You don’t have to make it difficult. It starts by minor changes and realizing that you have to put in some work for whatever outcome you’re looking for. It takes time, but I promise you’ll find something that works for your body if you give yourself the chance.

    Side Note: The side by side picture is a 1 year difference from my Junior and Senior Prom. Then there’s me now because I’ve worked so dang hard.

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4 Responses

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