Pelvic Pain: Why a “Diagnosis” isn’t the Key to Recovery

In Female Pelvic Pain, Male Pelvic Pain by Stephanie Prendergast46 Comments

 

When symptoms of pelvic pain strike, it’s natural to want to know: What’s my diagnosis?

Every patient just beginning his/her journey to recovery from pelvic pain grapples with this question. But more often than not the quest to get that diagnosis leads to frustration and disappointment. On top of that, it can actually cause roadblocks to getting on the right treatment path.

For instance, so often patients come into our clinics either terrified of a “diagnosis” they’ve been labeled with (or given themselves) or so married to one diagnosis or another that it’s hard for them to think outside of that diagnosis box when it comes to putting together a treatment plan.

For the past few months we’ve been working to write a book about pelvic pain titled, Pelvic Pain Explained, and this is a topic that’s been on our minds a lot this week as we’ve worked to explain this concept in the book. In this blog post, I’m going to share the explanation that we composed for the book because I think it’s also a very blog-worthy topic!

Let me start the post by saying that I completely understand the desire for written in stone diagnosis. Not only does it validate a patient’s pain, especially if he/she has run up against a provider who’s dismissed his/her complaints or intimated that it’s “all in your head.”

But the fact is the treatment of pelvic pain widely diverges from the treatment of most other medical conditions.

Let me explain. Typically, when you have a medical problem, you go to the doctor, who perhaps runs a few tests, and then from there you get a diagnosis and treatment, usually some sort of medication.

Well, the diagnosis and treatment of pelvic pain simply does not work this way. When it comes to pelvic pain, a “diagnosis” does not dictate treatment.

For its part, pelvic pain ends up being a diagnosis of exclusion whereby other pathologies, such as an infection, must first be ruled out, and when symptoms persist, the patient is then given a descriptor diagnoses, such as “vulvodynia,” which simply means “pain in the vulva.” Indeed, oftentimes, the “diagnosis” simply is “pelvic pain.”

A second example is “interstitial cystitis/painful bladder syndrome” or “pudendal neuralgia,” meaning pain in the bladder or the pudendal nerve distribution respectively .

When a patient is given any one of these descriptor diagnoses they are often confused and frustrated mainly because there are no specific, one-size-fits-all treatment protocols for any one of them.

Understanding how a pelvic pain syndrome, whether it’s been tagged as “vulvodynia” or “pudendal neuralgia” is treated can restore hope.

So if a diagnosis does not dictate treatment, what does?

What does dictate treatment when it comes to pelvic pain are the specific neurological, musculoskeletal, and psychological impairments that are uncovered and determined to be involved in a patient’s symptoms.

As already mentioned, pelvic pain is rarely caused by just one issue, more often than not, it’s caused by a combination of factors, including impairments of the pelvic floor muscles, the central and peripheral nervous systems, and even behavioral issues, like poor posture or “holding in” one’s urine.

Therefore, a successful treatment approach involves identifying and treating all of the different impairments contributing to a patient’s symptoms.

These impairments might be found in the muscles, joints, nerves or connective tissue of the pelvic floor and/or the pelvic organs and the derma of the genitals. So we’re not just talking about that hammock of 14 muscles described above.

Therefore, the best course of action is to identify all of the impairments that contribute to a patient’s pelvic pain, and then treat each and every one of them individually while collectively treating the patient as a whole.

Is this an issue that you’ve faced in your recovery from pelvic pain? If so, please share your experiences in the comment section below.

And if you haven’t already, SUBSCRIBE to this blog (up top, to the right, under Stephanie’s photo!), so you can get the weekly blog update in your email inbox, and follow us on Facebook and Twitter where the conversation on pelvic health is ongoing!

All my best,

Stephanie

 

Comments

  1. Hi Stephanie–

    Great post, as always! This blog has been a godsend. I have been fortunate to work with Sue George (Pittsburgh, PA) in addressing my pelvic pain, and in the beginning I definitely wanted a definitive diagnosis as to what, exactly, my issues were. Through working with Sue, I came to understand how multifactorial pelvic pain is. We made significant progress on a number of my symptoms but I couldn’t quite get the resolution of symptoms either one of us wanted for me.

    As we peeled back the layers, it became clear that hip pathology was an ongoing issue. I have a history of femoroacetabular impingement that has been treated arthroscopically (L, 2007; R, 2008). Around 2010 or so I started to develop pelvic issues and began working with Sue in 2013. After a revision hip scope on my right side in 2014, my pelvic floor symptoms largely resolved within about 3 weeks of surgery. It was really incredible.

    I don’t think my surgery would have been nearly as successful had it not been for Sue’s work, and the two of us meticulously addressing everything we could without surgical intervention, so that it became clear that the hip was still a factor.

    So as frustrated and lost as I felt at times, with Sue’s help, I am happy to say I’m returning to activity and discovering new ones (paddle board yoga! Woot!). A good pelvic floor therapist is THE WAY towards getting better. The holistic approach, the attention to the brain, heart and soul of the patient coupled with keen analytical skills–you are all angels and I’m deeply grateful for the work you do!

    Consider this my Valentine to you and Sue–you both have helped me through some dark, dark days.

    Thank you, thank you, and thank you again–

    All best,
    Jenny Kline
    Washington, PA

    1. Author

      Hi Jenny,

      Thank-you for your post! Your story accurately describes what so many PTs and patients have to go through. The good news is, recovery is possible. Do not lose hope if the first treatment plan needs to be revised to get you to the next level of improvement. We do this every day. I am happy to hear that you and Sue stuck it out, kept trying, and succeeded. Kudos to you both.

  2. This article gave me cause to pause and reflect. My journey was and still is frustrating. With medical bills of over half our gross income in 2013 and 2014, I’m to the point of trying to get healthier one more year and letting nature take its course beginning 2016. Sure I have multiple diagnoses, and at least with the names, treatment is occurring. I strongly think that much of this is because our medical system is fragmented into so many specialties that don’t interact, just refer. For me, the different names to what is happening to my body doesn’t matter except that the multiple doctors, physical therapy specialties, etc. seem to treat just their specialty condition and without a name, it isn’t treated. I believe that pelvic health is something that needs to taught when a girl gets her first pelvic exam and PAP smear. I’m 61 and never, never did any doctor talk to me about Kegels, the importance of intercourse to women’s health, etc. Prevention is the only thing that would have given me a fighting chance of being able bodied now. My core is a mess, I fall, my pelvic floor is compromised by too tight muscles, prolapse, pudendal neuropathy, incontinence of the bladder and bowel, etc. I am getting excellent care from my OBgyn, pain doc, gastro, and physical therapist, but at a cost too high to be able to maintain year after year. Prevention, prevention, prevention would have made a difference, not naming what’s wrong. BUT I would not be getting treatment approved by our insurance without a name so for me the name equals treatment. Diagnosis seems to be a necessary evil in our fragmented, broken health care system. Thank you for the excellent article and also for the work you do to educate. May it help many!

    1. Author

      Hi Brenda,

      Thank-you for your very accurate post about the challenges in our healthcare system and the experiences of people dealing with pelvic pain. I am sure your comments are going to hit home with many people who have been through similar situations. We will continue to raise and awareness and work together. It is important not to give up!

    2. Brenda, Your story seem familiar to me. I’m 44. I’ve had pain in my left lower abd or pelvis, nonstop for over 4 months now. I’ve had 4ct scans, colonoscopy and blood work. I’ve seen 4 doctors and still have no DX or plan of care. Its so confusing and I don’t know what to do or where to go next.

      1. Author

        Hello Sue,

        Have you received an evaluation from a pelvic floor therapist? If not, I’m happy to offer you a recommendation. Where are you located?

        All my best,

        Stephanie

      2. Sue, I feel for you. It took me 2 years to find the right medical people. It’s frustrating. My women’s health physical therapist was the most help so if you haven’t tried physical therapy, it might be a good next step. Also, have you asked for an upper GI with small bowel follow through xray? I hope that you find answers soon. Brenda

  3. I really do appreciate your blog posts, they are always so helpful for me. Especially because I do not have a well-educated therapist to give me advice.

    After several years of suffering from pelvic pain and just getting everything-is-ok-diagnoses I’ve started to educate myself and definitely found that there is more than one reason for my symptoms to persist and I try to find health care providers for each of it. It’s a difficult journey but it brought me closer to feeling and realizing my body and the messages it sends to me with all this pain. Often I wish just to be and feel “normal” again. But I feel that I need to listen and change my lifestyle in so many ways to meet this goal. And I try to experience this journey as something that will eventually change my life for the better.

    I am excited to read your book. When will it be available?

    Again, thanks so much for your work.

    1. Author

      Hello Marie,

      Perhaps you can receive a second opinion if your current therapist is unable to fully comprehend your situation. Where are you located? I’d like to recommend a few therapists for you. Our book will be available early this summer!

      Best,

      Stephanie

      1. I would be so glad to see a therapist who knows more than I do about my condition but was unable to find one in my area. I live in Leipzig, Germany.
        If you knew someone in central Europe who is really well educated I would be willing to travel to get a second opinion.

        Thanks for your reply.

  4. Stephanie, you are brilliant. This explains my situation perfectly and it’s so reassuring. I’m going to e.mail this to my mom who’s constantly frustrated that I don’t have a simple diagnosis. Thank you for helping me and so many others so much! -allison

  5. I’ve been suffering from chronic pelvic pain for over three years now. I have a fabulous physical therapist who has been the only provider (and I’ve seen many) to actually help me. My problems include tight pelvic floor muscles, abdominal adhesions, and muscle pain in my one hip. My pt addresses all of these each visit, and I’ve gone from being in near constant severe pain to much less frequent and mild. However I still wonder if we’re missing something. I still cannot exercise without days of pain following, so I just don’t exercise anymore. I used to run 3-10 miles several days a week with no issues. The last time I was intimate w/my husband the pain lasted weeks. I’ve been in pt for 2.5 years now. It’s discouraging that after so much time I still cannot do “normal” things without ending up in pain. Is it common to never fully resolve these issues? I don’t even know what else to explore.

    1. Author

      Hello Kate,

      There are certainly some lifestyle modifications necessary to prevent a flare up of symtpoms, but I would encourage you to seek a second opinion from another therapist. He or she can go over your current treatment plan with a fine toothed comb, and see whether or not something has been missing. Where are you located? I may be able to recommend a therapist.

      All my best,

      Stephanie

      1. Thank you, Stephanie. I am in Northeast Ohio. I can go to Akron, Cleveland, Youngstown, Pittsburgh, or anywhere in between.

        1. Author

          Hi Kate,

          The Cleveland Clinic has a good week long program, otherwise here are therapist recommendations for Pittsburgh:

          Janice Bryant
          UPMC Centers for Rehab Service
          Pittsburgh PA
          (412) 422-4775

          Christine Woods, PT
          Fox Chapel Physical Therapy
          Pittsburgh PA
          (412) 967-9229

          Cleveland Clinic
          9500 Euclid Avenue,
          Cleveland, Ohio 44195
          1(800) 801-2273

          1. Thank you. My first year of pt was at the Cleveland clinic. They felt I would require 6 – 8 sessions but that obviously wasn’t the case. I’ve been unable to find any info on a week long program. Do you have any other information about that program?

          2. Author

            Hi Kate,

            You will need to contact them directly. I do not have any specific information at this time.

            Best,

            Stephanie

  6. I have been going nuts with my pelvic pain since July and have spent thousands of dollars trying to figure this out. Ultrasounds, MRI, PT – 3 different ones…. I had pinching right sided urethra/clitoris area pain when I would walk. The pinching part has subsided, but I am left now with burning in the same place, plus it burns up inside more when I exercise. The clitoris gets pretty irritated with exercise and then it makes sitting unbearable. Mine started with UTI, which was treated then two weeks later this happened. I am, was, an active runner, did lots of core exercises and had recently started doing Kegels. In fact the week before this all started. Can a person pull/strain muscles by the urethra/clitoris doing Kegels? Also, can you recommend a PT or doctor in Iowa. I have been considering the Dr Kotarinos in Chicago.

    1. Author

      Hello Linda,

      Rhonda Kotarinos, and all the therapists at Kotarinos Physical Therapy are experts in this field, and would be able to assist you. Kelly Brown is located in Iowa and is also a great resource. I wish you the best in your treatment.

      Regards,

      Malinda

      Kelly Brown, PT
      Des Moines IA
      (515) 875-9706

  7. I can relate to everyone’s comments. I have been dealing with pelvic pain for almost 5 years and have been seeing a pelvic floor PT for almost 3 years. My PT is amazing(was newly trained when I started with her so we have been learning as we go) but just when I think we almost have it solved something else happens. I had been doing yoga for years and also had started doing kegels a while before this pelvic pain struck me very suddenly. I have had botox vaginally a couple of times. That seemed to solve some of the tight spasming muscles. Now the trigger points and spasms are more easily worked on rectally so we are working it from that angle. It seems to be mostly my piriformus muscle & while trying to release that I gave myself some serious sciatic pain. I do some internal release on my own but it is never as good as when my PT does it and I often make it worse:( I would give anything to have Jenny’s outcome. I have become sensitive to meds so had to go off them. I often use a TENS unit for pain but that seems to be giving me grief now as well. Right now I am trying LLLT or low level laser therapy. I try meditation & pain reduction techniques. Any thoughts would be greatly appreciated. I too get good information from this blog so thank you for that.

    1. Author

      Hello Lou,

      I’m sorry to hear about your situation. You may want to consider obtaining a second opinion to be sure there isn’t something that your current therapist is missing. If you are able to travel to our Boston or Los Angeles office, Liz or I would be able to evaluate you. Please contact our office for more information. (415) 440-7600

      All my best,

      Stephanie

      1. Thanks Stephanie…I would never rule that out but I should have told you I live in Grande Prairie, Alberta, Canada. I am a 4-5hr drive from Edmonton. Also my PT here was newly trained in pelvic floor rehab 3 years ago but is a very experienced PT. A second opinion is never a bad idea…..I would really love to speak with you.

  8. I just found your site. I have been several years trying to get help, and also bounced from specialist to specialist, each focusing on their particular area and passing me along. I have had to research all this myself, and just starting to put the pieces together. I am coming to understand that this isn’t something that is easily fixed and it is very frustrating and limiting.

    I am in Bridgewater NJ. Is there anyone you can recommend in NJ, PA or the 95 corridor down through Baltimore?

    Thank you! I am looking forward to your book. I need more tools in my toolbox.

    1. Author

      Hello Lisa,

      Below are our therapist recommendations for NJ:

      Niva Herzig, MS,PT Englewood NJ (201) 568-5060 Core Dynamics PT
      Jamie Besante, PT Beachwood NJ (609) 978-3110 Southern Ocean Medical Center
      Michelle Dela Rosa, DPT Columbus NJ (609) 379-0900
      Nancy Ely-Maskal, PTA Englewood NJ (201) 567-2277 Physical Medicine and Rehabilitation Center

      Regards,

      Stephanie

  9. Hello. I was diagnosed with IC in 2009 and had gone into remission for two years until 2 weeks ago when a yeast infection caused a flare. I got that taken care of and things calmed down until Tuesday the 5th.

    On Tuesday I had my private Pilates session then went to the DMV and sat in those hard plastic chairs. Almost immediately my back started hurting and then pins and needles radiated down my leg. Thursday I went to the dr who ordered X-rays. By then I had pins and needles every time I sat down and a tingly numbness had spread to my sit bone and crotch on that same side. Last night after watching a movie with friends I had gotten perineal soreness, vaginal burning, weak stream with some retention and it felt like peeing liquid fire. It was all gone this morning until I had to sit again.

    Sunday I had attempted to ride my horse to be met with sit bone pain, sciatic tingling and pins and needles down the inside of my thighs.

    I am absolutely terrified this might be PN. I can’t lose my ability to ride!

    I am meeting with my urologist this afternoon and I have PT scheduled on the 28th with Jen Brosnan at providence st. Vincent rehab. She is who I’ve used for pelvic floor therapy in the past.

    Could this just be sciatica referring to my crotch area? Will o be able to get back to my normal ‘just IC’ self?

    Could you also recommend therapists in the Portland Oregon area in case mine doesn’t help?

    Thank you.

  10. Hi! I am writing to see if you could recommend a specialist or specialist group for me. I live just south of Sarasota, FL. I have lived in pain for 11 years, and haven’t been able to work since. I was diagnosed with interstitial cystitis, vulvudynia/vestibulitis, endometriosis, later developing pelvic floor dysfunction and pudendal impingement/neuralgia. I have had Botox in different places, nerve blocks, radio-frequency ablations, pelvic floor physical therapy, etc. Initially I was in the DC area, an area rich with specialists. Now I feel like I’m in a desert, and have no one other than myself to guide my ship. I would LOVE to get in to a specialist (team?) that could reevaluate and guide me. I’m convinced there is a missing link somewhere. Suggestions would be greatly appreciated! Thanks-

    1. Hello Kimberly,

      I am sorry to hear about your situation. Unfortunately, we do not have a recommendation for Sarasota, but I can recommend a few therapists in FL. Their information is located below:

      Ashley Arango, PT and Katherine Marsh, PT
      Florida Hospital Pelvic Health Rehab
      Orlando FL
      (407) 303-8280

      Tracy Sher, PT
      Florida Hospital
      Altamonte Springs
      (407)257-1403

      Pamela Downey, PT
      Miami FL
      (305) 666-3232

      Best,

      Stephanie

    1. Hello Keri,

      Sarah Fosheim, PT is located in Sioux Falls, SD. Sarah has taken our specialized course, and may be able to assist you.

      Sanford Women’s Health Plaza
      SarahFosheim, PT
      (605) 328-9729

      Regards,

      Stephanie

  11. Recently my back pain has been traced to weakness/instability in my pelvic floor (with involvement of scar tissue from a vaginal tear.) The interesting thing is my muscle imbalances (left side increased tone and right side weak and some atrophy) extends not just in the quads, back & glutes but apparently in my pelvic floor muscles, too. It’s like the entire right side is weak & left side overworked. I do not have a short leg or similar cause for this and was wondering if you’ve ever run across this in your practice. I cannot seem to get a opinion as to possible causes… which I think is important if we are to fix the problem. Right now I feel we’re just chasing symptoms. Or could asymmetrical PF muscle development be a possible cause itself??

    1. Hello Marie,

      It is difficult to know what caused your symptoms to begin with, without first evaluating you. However, it is unlikely that an asymmetrical PF muscle is at fault, and perhaps there are some biomechanical, structural findings that could explain your symptoms. Many of our patients do present with right or left dominant symptoms, and this is quite common. If you are interested, I may be able to offer you a therapist recommendation in your area.

      Best,

      Stephanie

      1. Since my post we have discovered that my tailbone is dislocated at a 90 degree angle (anteriorly & a wee bit to the right.) This could have only happened 11 years ago when I gave birth to my son and was plagued by unrelenting sitting pain that was thought to be from the perineum area due to a vaginal tear. No one ever checked the tailbone. I have sat favoring the left “cheek” ever since (in fact,the right sit bone seems to be hiked up making it difficult to make good contact when sitting.)

        A PF PT seemed scared when making the discovery of the tailbone’s position and cautioned me against mobilizing it because it’s such an old injury. My doctor (pain management who also employs osteopathic treatments) is not concerned with trying and assures me that the mobilization process is gentle & slow.

        I have only had one poor quality X-ray of the tailbone. Next month I am seeking the opinion of a different PF PT (as I will need PF pt no matter what we do.)

        Have you ever seen someone with such imbalances result from a longstanding dislocated coccyx? (I’m still trying to piece all of this together)

        Also, do you ever recommend CT or MRI imaging before attempting mobilization in such a case?

        I’m just trying to get as many perspectives as possible.

        1. Hello Marie,

          All great questions. A CT/MRI is not required prior to any pelvic physical therapy evaluation or treatment, but it can be helpful. If your therapist feels that will provide additional insight, a CT or MRI can be recommended after an evaluation however, a therapist should be able to identify if the surrounding tissues are aggravated without the imaging. A deviated coccyx can create many of the symptoms you have mentioned, and a gentile manipulation could possibly help alleviate your pain.

          Best,

          Stephanie

  12. When I initially got pelvic pain (after ic symptoms) I was paranoid I had pne and in my head pne was hopeless. Still when I flare (like a recent one where a nerve block the usually helps actually hurt me) I keep wondering pn or pne. I think I am just wondering can I be helped or am I hopeless? I had gotten hugely better with pt and nerve blocks and lifestyle changes. I should be trusting me body to heal (even after this nerve block incident its on and off better after pt, ice or heat. I know my worry and my obsession over my diagnosis and symptoms probably impairs me more than it helps. That’s why I love this blog- it gives countless stories of hope.

    1. Hello Amanda,

      I’m sorry to hear about your situation. Are you currently receiving treatment from a pelvic floor therapist? I may be able to recommend a local therapist.

      Best,

      Stephanie

  13. I am wondering if you recommend any PT specialists in Dallas? I have had IC for the last 20 years or so. It is well controlled except after intimacy. A day or two afterward I have a severe flare that lasts anywhere from a few days to a week or longer. I do get an actual bladder infection from it once or twice a year. However, the other times seem to be a flare unrelated to an infection. Thanks for any ideas you have!

    1. Hello Andrea,

      Yes! There are a couple great providers that are located in Dallas. Below is their information:

      UTSW Medical Center
      Sara Reardon, PT
      Dallas TX
      214-645-2080

      Baylor Landry
      Valerie Bobb, PT
      Dallas TX
      (214) 820-1860

      Best,
      Stephanie

  14. Regarding PN – with regards to symptoms, does incontinence or feeling of something being “lodge” in the vagina/anus a normal description? For 6 years now I’ve dealt with BURNing pain if I sit (a toilet seat brought immediate relief – I discovered about 5 years ago :)) In the past year or so I find that standing has also become a no-no. I exist with very cold gel ice packs & daily Percocet – 6X/day —although this has recently been reduced to 5 – eventually to go to 3 because of CDC/FDA requirements. I believe my problem started 6 years ago following a hip replacement that dislodge 2 months later – redone – and then sciatica began followed shortly by L 4 & 5 fusion – followed a few months later by the beginning of burning pain in the buttocks – eventually taking a life of its own in the perineum area. I’ve always been told it was PN but now I’m wondering if it is when incontinence is mentioned.

    1. Author Stephanie Prendergast says:

      “People with PN may also experience incontinence and may also experience the feeling of something ‘lodged’ in the vagina anus. This sensation can come from tight muscles, neural inflammation, or pelvic organ prolapse. Incontinence can come from pelvic organ prolapse, pelvic floor dysfunction, or pudendal neuropathy. These symptoms can exist together and a differential diagnosis can help determine the source of the problems and the treatment plan is often multi-factorial.”

  15. My doctor never really gave me a diagnosis except for pelvic floor tightness. Sometimes I do wish she would say more although she is very detailed and helpful in explaining treatments, etc. I had pelvic floor pt a few years ago and the pt said I I had puedenal neuralgia. I went for a while and I was able to be discharged and to do most of the things I wanted to do with some occasional flares and maintenance. Well, I had an orthopedic injury happen and now everything went awry. I have seen a ortho pt and everything really flared, now I am seeing someone that I like a lot that does both, but my nerve symptoms are getting worse and I’m now experiencing burning going down my legs because I flare from some (not all) of the exercises-I think, like squats. I have nicely communicated this and I do discontinue them, but then she has me try others. So right now the Dr. just says I need pt and I’m afraid that my pt may not understand what I have going on. I would like to get a second opinion from another pt, but feel like I have developed a relationship with the one I have. Thoughts? I am in MD, do you have any recommendations?

    1. Hi Marie,

      We recommend Her Health Physical Therapy, their number is (443)283-2018.

      Regards,
      Admin

  16. HI – I live in PIttsburgh, PA. I was recently diagnosed with IC, Vulvodynia, and overactive bladder. I tried the DMSO injections, overactive bladder medicine and NOTHING seems to be working. I had ultrasounds done, MRI done, and still nothing. I am getting married this may and am determined to feel better by then. Do you have anyone you could recommend in my area? PLEASE HELP

    1. Hi Patsy,

      We recommend Christine Woods at Fox Chapel Physical Therapy, her number is (412) 967-9229.

      Regards,
      Admin

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