pelvic floor dysfunction

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Undiagnosed, trying to navigate the healthcare system.

I've been trying to get answers about what the hell is wrong with me for so long I am starting to lose hope. Growing up my parents thought I was just a hypochondriac. Then when I was able to start going to doctors visits on my own and was diagnosed with #PCOS at the age of 15/16 I finally had proof that some if my symptoms were real.

I was finally diagnosed with #mitral vavle prolapse at the age of 26. Turns out that I've had it my entire life but no one cought it until just recently. In addition to the mitral valve prolapse I was also diagnosed with #CongestiveHeartFailure #rectocele #vaginismus #lymphadenopathy #BipolarDisorder #Hypertension #Sleep apnea and #PelvicFloorDysfunction .

I also fit the criteria for a lot of other conditions but I'm having a hard time getting clear answers from my doctors as to wether I do or do not have these other conditions.

Does anyone else find it difficult to actually get a diagnosis from their doctors? Even when you meet all of the criteria for such diagnosis?

My current issue is that I'm trying to get in to see a geneticists to get tested for #EhlersDanlosSyndrome and other connective tissue disorders. In order to do so you have to provide a lot of documentation showing why you should be tested for genetic conditions. Part of this documentation would include the conditions that you've been diagnosed with. But since I have not gotten an official diagnosis for many of the conditions I suffer from I don't have a way to include them in the documentation to send to the geneticist and I have been denied an appointment twice now.

It's like a puzzle. I need my doctors to help identify the missing pieces so that I can go to the geneticist and have them complete the puzzle but I am so tired of having to push and push and push to try and find doctors that are willing to run the tests and not just give up before the missing process are identified.

Why is the process so difficult? On top of it all I have suffered from #Undiagnosed #ChronicFatigue for the past 8 years and I just don't have the energy to continue fighting. But if I don't continue fighting then I'm only going to continue to decline. It's a never ending loop.

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Community Voices

Rise

<p>Rise</p>
19 people are talking about this
Community Voices

Question for the Ladies: Pain from internal ultrasound still present 3 days later?

Three days ago I had to have an internal ultrasound to check for structural issues with my uterus and ovaries. My doc determined that I have pelvic floor dysfunction related to my EDS causing a variety of symptoms, esp. frequent pelvic pain. But I am still having intense pain from the ultrasound even after taking my pain meds and using a heating pad. Have any other women experienced this same or a similar problem? How did you deal with it? #WomensHealth #Pain   #PainManagement #PelvicFloorDysfunction   #Pelvicpain #EhlersDanlosSyndrome   #EDSers   #HypermobileTypeEDS   #RareDisease

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Maya Lorde

Experience: Pelvic Floor Physical Therapy as a Sexual Abuse Survivor

Childhood sexual abuse changes your entire world. There is nothing my trauma history does not touch. No matter what I do, I cannot escape it. It turns out this physical pain I have been in for many years means I have problems with my pelvic floor. Lo and behold, it is more than likely related to my sexual abuse . Between 22% to 48% of (mainly) women with pelvic floor dysfunction have a sexual abuse history . At least I am not alone, but I am surely not happy about it. Here is my trauma once again haunting me and I am once again out of control. But this time, I am going to take back control. Good Care Led To My Leap of Faith TMI warning: I have had constipation for as long as I can remember. Sometimes it gets bad. I also have gastroparesis on top of that, and it does not help. It is embarrassing and not many people can discuss this with you, but I got a good doctor and she is helping me. When we could not get my constipation under control, she recommended I have an anorectal manometry. I flipped out. There was no way someone was going to go into my rectum and have me do things with my sphincter muscle. I cried and admitted to my doctor that I had a trauma history and could not possibly subject myself to the test. She listened and assured me her nurse would be kind, caring and understanding, and would take precautions with me so that I would be able to manage the test. She felt it was necessary and I really need to get to the bottom — pun intended — of my issues before I had even bigger problems. I asked her what the treatment would be if she found out that I had a problem with my pelvic floor. She stated physical therapy (PT). This did not alarm me. I had been to physical therapy, so I knew what to expect. I later learned that physical therapy for the pelvic floor involved internal work in the vagina and the rectum. I came to a full stop and deep panic set in. Now, I really did not want the test. Why have it if I was not going to do the treatment? I called the doctor back. I told her my concerns and she said she had spoken to a trauma -informed physical therapist for me and that she would take good care of me. After the test, I was diagnosed with moderate pelvic floor dyssynergia. When you have pelvic floor dyssynergia (pelvic dyssynergia), the muscles in your pelvic floor become uncoordinated. This makes it difficult to have a bowel movement. My Own Homework Led To Discovery As usual, I headed out to do my own research. I was right about the pelvic floor PT. I was scared. I continued to read and found out that the lifelong low back pain that I experience could be related to a weak pelvic floor. Now, this got my attention. I have been extremely limited most of my adult life with back pain and have had surgery. This treatment could be a game-changer for me. I could have my mobility back. I just needed to agree to this PT. I was so scared. I had a long talk with my therapist about embarking on this; she was hesitant but also did not know much about it. My psychiatric nurse thought it was a bad idea and could possibly set me back in my healing. She even said it might land me back in the hospital. They both advised that I should consider all the pros and cons and come to a decision I could live with. I hate when my abuse is a barrier to my happiness, peace of mind and well-being. I often find myself torn between wanting something and not wanting to upset my fragile equilibrium. I decided I really wanted this. I really wanted healing and I was going to have to take a cautious leap of faith and take actions for myself. Scared Out of My Mind, I Did It Anyway I made my appointment and panicked a bit. I asked the scheduler if the PT would call before the appointment just so I can know what to expect out of the first visit. Lo and behold, they had a cancellation and I ended in the office before she and I could talk. My biggest fear was that she was going to do an exam on the first day. I knew if she did that, I would have a breakdown. We sat down and made introductions. I liked her already; she had a warm demeanor. Before we got too far into the appointment, I shared that I had some trauma history and I feared this treatment — I had made notes on a piece of paper just in case I was too scared to speak to her directly about it. She reassured me she had dealt with other women like myself and would take everything at my own pace. We did not do an internal exam for the next few weeks of treatment. So, last Friday, I finally did it. I let her examine me and I am here to tell the tale. It was easy and uneventful. I did not freak out on her or have a breakdown. She was excellent and professional and kept it very clinical. I am so proud of me. I did not let the trauma beat me this time. I may still have some emotional repercussions and I did not sleep the following night, but this is another indicator that I am getting stronger and that all this therapy is paying off. I do not need another challenge like this any time soon, but I will be ready. I am already making progress in PT and I am happy about where this is headed. I want you to know that our trauma can be very limiting, but it does not have to rule us to no end. There are opportunities for us to tuck our heads out from under it and rise above it. So, remember: You are brave. Your past does not determine your present, it just informs it. You can do anything you set your mind to. It is OK to be scared and still do it. No one can take these steps for you. Change is necessary in your own time. You are worthy of healing. Your body is safe. You are in control. You’ve got this. You are Mighty. Maya Lorde

Community Voices

Happy Tears

<p>Happy Tears</p>
4 people are talking about this
Sara T.
Sara T. @endosara
contributor

Treating Pelvic Floor Dysfunction With Endometriosis

Having endometriosis can be hard enough, but what a lot of people don’t know or realize is how endometriosis impacts your pelvic floor muscles and can cause pelvic floor dysfunction, which can also be a separate pain generator. I wanted to share my experience with these two conditions because I don’t think it’s talked about enough (likely because it deals with muscles “down there”). It’s such a common condition that accompanies endometriosis and we need to start talking about it. That being said, let’s get to it! What Is Pelvic Floor Dysfunction? Pelvic floor dysfunction breaks down into the inability to correctly tighten and/or relax the pelvic floor muscles. Your pelvic floor muscles support organs that rest on them, along with controlling the ability to use the bathroom or “holding it” until we can make it happen. Sometimes people cannot tighten their muscles, whereas others struggle to relax their muscles. This can also cause urinary issues (such as the urge to urinate or painful urination), constipation or bowel strains, lower back pain, pain in the pelvic region/genitals/rectum, discomfort or painful sex for women, pressure in the pelvic region or rectum, along with muscle spasms in the pelvis. Every case is different, much like endometriosis. I loved the way my pelvic floor physical therapist explained how endometriosis can cause pelvic floor dysfunction, so here’s her version that really helped me understand the correlation between these two conditions and why it likely transpired: “Your pelvic floor muscles are naturally relaxed, but when they feel something that can cause distress (such as pain, high levels of stress or even anxiety) they can tighten up and go into a ‘Guard Dog Mode’. They only do this because they think they need to protect you from the distress signal. With endometriosis, and from your history, it sounds like you were dealing with pain chronically so naturally, your pelvic floor muscles were tightening to react and protect you from that pain being signaled in your body. Since you had excision surgery, that portion of pain is gone now, but your pelvic floor is so used to protecting you for all that time, it’s almost like they forget how to come down from it and don’t know how to go back into their natural and relaxed state so they’re essentially stuck in ‘Guard Dog Mode.’” And that’s where pelvic floor physical therapy comes into play and can help. Pelvic floor physical therapists can improve your specific pelvic floor dysfunction issues during weekly or bi-weekly physical therapy sessions over a set timeline. They will use a range of treatment measures, which may include breathing techniques, biofeedback, manual therapy, trigger point muscle manipulation, exercises to strengthen muscles, stretches to relax the muscles, and vaginal dilator training (often done at home in privacy). Keep in mind, the physical therapist will create a unique treatment plan with any of the above methods as they see fit for your muscles and issues. They will often have you come in for an initial consult, where they will do an external and internal exam. From there, they will create your treatment plan and can send in the required documents to your health insurance to coordinate the duration of physical therapy, as well as how many visits you can receive. Again, this will vary from patient to patient. I had three months of pelvic floor physical therapy before getting excision surgery for my endometriosis. Some progress was made, but it wasn’t where I wanted it to be by the time I finished. My pelvic floor dysfunction pain was different compared to the endometriosis pain I felt, along with often being on a pain level of 3-4 daily. During endo flare-ups though, my pelvic floor pain would heighten, and some days would even reach a 6-7 on the pain scale — and that was just my pelvic floor pain being that high, not including it in combination with my endo pain (which would be on a whole other scale). However, after having my excision surgery, my chronic endometriosis pain significantly decreased and I daresay it felt like it completely vanished. This is not the case for everyone, and I know I still have endo since it cannot be cured, but to be able to eliminate that chronic pain I dealt with for months on end gave me my life back. During my excision surgery recovery, I still noticed the pelvic floor pain though, so I let my surgeon know and we decided together that it was probably a good idea for me to go back and do more pelvic floor physical therapy for a second round. This time around, I found a different pelvic floor physical therapist using the website Pelvic Rehab. It was the best decision I made, and I am so thankful my first pelvic floor physical therapist recommended it to me when we wrapped up my first round of therapy (as they suspected I would need more after my excision surgery). I loved my second pelvic floor physical therapist. She was amazing, kind and very understanding from our first consult. Since the excision surgery was successful, my muscles were much easier to manipulate and relax. That chronic pain was gone, leaving my pelvic floor no logical reason to stay in “Guard Dog Mode” after they were worked on. My second round of physical therapy was much more successful — even on my bad days, I rarely had pain over a 3 or 4 on the pain scale for my pelvic floor, which was incredible. Today, I hardly ever have pelvic floor pain that goes over a 2 (even during a flare-up) which is huge progress. I am so grateful that I pushed myself to do more physical therapy after my excision surgery because the difference is night and day. The other great news is that now when I feel that pelvic floor pain, I know what I can do to help make it better on my own because I have the right knowledge, thanks to my amazing physical therapist. Pelvic floor dysfunction is something I think all women with endometriosis should investigate further with their care providers and determine if pelvic floor physical therapy may be worth trying. I wasn’t even aware I had any form of pelvic dysfunction until I saw my endometriosis excision specialist and he explained it to me based on how my pelvic muscles responded/spasmed during a pelvic exam. No one else on my healthcare team picked up on this issue for well over a year, so I am very grateful my excision specialist did as the longer something goes untreated, the worse it can get. This is another reason why I wanted to bring awareness to these two conditions. What They Don’t Tell You About Pelvic Floor Physical Therapy One thing I want to talk about regarding pelvic floor physical therapy is the emotional toll it may take on you. This is something I didn’t know about or expect, but I found out firsthand during my first and even more so during my second round of physical therapy. First, pelvic floor physical therapy is very invasive. You’re basically letting a stranger touch and manipulate your body, usually externally and internally. Those who have experienced sexual abuse in their past can have a really hard time with this treatment, which makes sense. If you find yourself in that situation, please let your physical therapist know as they can try to do as much as they can externally, along with understanding that the pace and approach may need to be different for you versus other patients (and there is nothing wrong with that). Let me clear the air here quickly; no, this was not applicable to me, but they do ask you about it during your first visit because there are other approaches they can use that are less invasive, so they can still help you make progress in a more comfortable way. I encourage you to be 100 percent honest and not let that keep you from getting the relief you and your body deserve. You deserve to live a less painful or pain-free life. We all do. The next thing I want to talk about is the emotional roller coaster you’re probably going to experience. There are days you’ll leave your session feeling like a champion. You endured your visit and even feel some pain relief, it’s a great feeling, and you feel like things are finally going right for a change! These moments are awesome, but honestly, I didn’t have too many of these moments during either of my rounds of physical therapy. Instead, I would often cry in my car on the way home from my sessions. Not because of the pain, but because of how I felt inside — I felt completely broken as a woman. As a woman, our bodies are meant to stretch, relax, tighten and more for so many things, such as using the bathroom, having sex or having a baby. Every time after one of my sessions, I would get in my car and take a deep breath and congratulate myself for making it through another session, but then my mind would always circle back to that same damn question, “Why do you even need these sessions?” Then I would remember why I needed them. My body was in so much pain, for so long, that my pelvic floor couldn’t even relax now that the pain had drastically decreased from excision surgery. It made me feel less like a woman all around. I do not have a child yet, and I used to want one, but after my endo pain and symptoms onset, along with the severe pelvic floor dysfunction that was brought on, this is a big and emotionally triggered question now. I don’t know if my body could handle it and I’m very worried the trauma of childbirth could potentially send my pelvic floor muscles right back into “Guard Dog Mode” and I would have to do more physical therapy again. Two times is hard enough, I don’t want to go back again unless I really must go back, which I might one day and that’s a hard truth. During my ride home from sessions, I would also fixate on the problems with my body down there and how they made me feel like less of a woman. The negative thoughts would keep rolling in, such as how I couldn’t just relax and control my own body to calm down, how the pain interferes with so many aspects of my life, that I might not be enough for my boyfriend — even though he has never made me feel like it and has been the most amazing man throughout everything I endured and continue to live with. I think about how I might be too afraid to try to have a baby if we wanted to make that decision, that a potential baby couldn’t even happen if I couldn’t tolerate or have sex, and that my chances of having a baby are already skewed because of having endometriosis. The thoughts would go on and on — it was tough. My second round of physical therapy made me realize I needed to go back to seeing my psychotherapist through online sessions. I needed someone to listen to me and help me navigate through these thoughts logically versus having them consume me in a downward spiral every time I went to physical therapy. Slowly, I started to be more accepting of those negative thoughts and was able to recognize them clearly to counter them. One important thing I took away from my psychotherapy sessions was this advice. Just because I’m a woman, it doesn’t mean I have to be a mother to be considered valuable, or that my life will never be complete or worthwhile without having a child. I can still find ways to feel like I am enough for my boyfriend, and I need to be open about my concerns and fears if we decide to try to conceive, along with being realistic given my health conditions. Additionally, I don’t need to feel pressured by anyone, explain why I don’t have kids at my age, or why I need to go to physical therapy so much and for so long at such a young age. Please know, I’m not saying this to scare you or make you worried about going to see a physical therapist for any pelvic floor dysfunction issues you might have. I firmly believe in pelvic floor physical therapy and can attest to how much of a difference it has made for me and my body, so if anything, I’m an advocate. I just don’t want you to go in unprepared and feel like you’re overreacting when you go through this as I did. This form of physical therapy is emotional as much as it is physical. It can be so easy to bring yourself down, but if you’re aware of what might happen before going in, I believe you will be one step ahead to stay on top of your emotional wellbeing and more prepared to start this new chapter in your health journey. Trust me, I believe you can do this, and it will be worth it in the end. The Bottom Line I didn’t choose to have endometriosis, just like my body didn’t choose to have pelvic floor dysfunction, but that’s life. It happens and all we can do is recognize the problem and do our very best to find ways to make things better for us moving forward. I hope this helped connect the dots for you if you have endometriosis and still experience a different source of pelvic pain. If you do, please talk to your doctor about having your pelvic floor muscles checked and consider pelvic floor physical therapy as your primary treatment plan. As always, take it one day at a time, in the best way you know how.

Community Voices

How to Deal with Anxiety from Flare Fear & Traveling?

<p>How to Deal with <a href="https://themighty.com/topic/anxiety/?label=Anxiety" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5f00553f33fe98d1b4" data-name="Anxiety" title="Anxiety" target="_blank">Anxiety</a> from Flare Fear & Traveling?</p>
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Community Voices

Everything Hitting at Once

<p>Everything Hitting at Once</p>
Community Voices

Wondering if anyone else out there has this body humming/ vibrating experience? Either during a #Manic episode or some other time?

I have been diagnosed with some many things #ChronicFatigue #GeneralizedAnxietyDisorder #Fibromyalgia #POTS #ComplexPosttraumaticStressDisorder #MCAS #InterstitialCystitis #PelvicCongestionSyndrome #ChronicPain #PelvicFloorDysfunction #Neuropathy I could go on but you get the idea...

so many diagnoses, so little "cures" most of the time I am just laying in bed wishing I had the strength, energy or just a little less pain so I could get at least a few items on my ever growing to do list checked off... but occasionally and for no particular reason that I can discern I have a day, sometimes longer, of complete #Mania - I can't slow myself or my mind down at all and when I lay down to try and sleep I feel like my whole body is humming with electricity and it just won't turn off.

l wish I could say I get my to do list accomplished on these days but I'm generally so scattered that I bounce from one thing to the next without actually completing anything. This episode is coming after a short period of days of needing 14+ hours of sleep and barely being able to get out of bed.

I have also had severe #constipation this week and did a Fleet enema on Wednesday, which unfortunately did not clean me out very well. is it possible that the stimulant laxative in the enema could create this hyperactivity?

Wondering if anyone else out there has this body humming/ vibrating experience? Either during a manic episode or some other time?

I also find it nearly impossible to eat when I get like this...

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Community Voices

tired of being alone & in pain & uncomfortable

feels like all I ever do is suffer. feeling very bed bound lately and I don’t have anyone in my life who I feel like supports me. years of my young adulthood have been robbed by this chronic illness. I’ve been so done for so long. it feels unethical at this point that I’ve had to beg my parents to allow me to see the right doctors. I’ve had to plead my case to my mom so many times about how I truly am physically sick and how I can’t get better with ‘positive thinking’. its useless. I’m in so much pain today that I have to cancel my dermatology appt. did I mention I have a contagious skin disease too??? yep. the cherry on top. it’s treatable but for some reason I’m “the worst case my dermatologist has ever seen” and it won’t go away and it keeps spreading on my body. I feel like an untouchable. I don’t even know how I got it.
I guess I’m still mourning who I could’ve been. and still mourning who I used to be. I had so much going for me. But this illness just got worse, not better. and everything I’ve worked for has crumbled in front of my eyes.
but mainly today I’m just focused on surviving the pain. ugh.
#ChronicIllness #ChronicPain #Headaches #BackPain #ColonicInertia #PelvicFloorDysfunction #Depression #nausea

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