It’s. Just. A. Flare.
Four little words that pack a lot of power for me, because they instantly put the brakes on an impending panic attack.
This wasn’t always the case. Used to be that when I’d have a flare-up of my pelvic pain symptoms, it would devastate me sending me into a panic-filled dark hole. But after some good communication with my PT, and frankly, getting to the other side of a handful of nasty flares, I had an epiphany, one that changed the course of my recovery.
My hope is that by sharing what I’ve learned about flares, I can help others who are on the roller coaster ride of pelvic pain healing. So here goes.
As anyone who has gone through the treatment process for pelvic pain can attest to, it’s a long, and oftentimes, complicated journey. There is no pill, surgery, set number of PT sessions, or any other secret sauce that will get you better. What does get you better is a “multidisciplinary treatment approach.” Basically, what this means is that you have to first assemble the right team of medical providers. Then you yourself have to be an active member of that team. Throw in a heaping dose of persistence and patience, and that’s how you heal from pelvic pain.
At any given time, my treatment team has consisted of a pelvic floor physical therapist, a physiatrist (pain management doc) and a urogynocologist. Treatments I have had include: trigger point injections, Botox injections, epidural injections, nerve blocks, medication, and a self-treatment routine that included pelvic floor down training (drops) and internal pelvic floor muscle stretching with a “crystal wand”. In a previous blog post, I shared my entire pelvic pain story.
As my previous post explains, I consider myself a pelvic pain success story. Oftentimes, however, healing has felt a lot like taking one step forward and two steps backward. And flares happened. At the beginning they happened A LOT. Even as I write this I can still recall the feeling of utter despair that would envelop me when I’d have an off-the-pain-scale flare up. For me, a pain flare meant and continues to mean an intense urethral/vestibular/vulvar burning coupled with burning sit bone pain, and maddening urinary urgency/frequency. A flare would come unexpectedly. I would be having a good day, or a few good weeks and then BAM! I’d feel as though I was back at square one.
Sometimes I could connect a specific incident to the flare. A long car trip, sitting for too long, wearing the wrong pants, having sex, traveling, a urinary tract infection; all could set off a three-alarm flare. But other times, a flare would just seemingly come out of nowhere.
Whatever was behind the flare, my reaction was always the same: I would hop on the catastrophizing train in my mind. “All that progress out the window,” I’d think. “I’ll never get better, I’ll never enjoy [insert activity here] again.” “My husband is going to leave me.” “I’ll never be able to have children.” “My family and friends are going to abandon me.” “I’m going to grow old alone.” “Should I ask my doctor if I should try [insert name of drug or type of injection] here?” “I’ve got to make a plan!!!” And on and on the train would race.
I would find myself in a true state of panic, and the anxiety would in turn feed the flames of my pain, and up up up my pain levels would go.
It wasn’t until I began getting regular physical therapy with Stephanie and Liz, who began to educate me about the healing process, that I was finally able to stop the train on its tracks. With their help, I was able to get to the other side of a flare without going into full-scale panic mode. Not only that, but they helped me to develop tools that I could use to actually get myself through a flare faster.
First, I want to share with you what I learned from Stephanie and Liz about flares.
Stephanie and Liz explained to me that:
Flares may happen as a result of very predictable things, such as a UTI or yeast infection, a bout of food poisoning, overdoing it at the gym, or even repetitive coughing because of the flu. It’s simply not always possible to avoid a triggering event, even when you know what your triggers are. For instance, stress, travel, and diet are common triggers that are often unavoidable.
In addition, when a pain flare can’t be tied to any tangible event, the central nervous system can be the culprit. This is because the central nervous system can generate pain without there being tissue damage. This is a key concept. Pain can occur in response to an actual threat like an a UTI or it can spontaneously occur on its own because the brain remembers what that UTI felt like.
I also learned that on occasion—not always because as mentioned above, sometimes there aren’t any triggering events behind a flare—a flare is your pelvic floor’s way of telling you it’s not ready for you to add a particular activity into the mix.
For instance, when I began to wear pants again, I realized that there were certain kinds of pants, tight yoga pants for example, that would flare me up. The pants were the triggering event because, as Stephanie explained to me, my tissues were still impaired. So I gave my cute, new yoga pants to my co-worker, and went back to my looser fitting yoga pants.
Along those same lines, it often happens that as we begin to feel better we start doing more, and sometimes flares are a reminder to pull back, and to slow down. Here’s some wise advice from neuroscientist Lorimer Moseley that I like: “Do more than you did the day before, but just a little more.”
Another thing that was explained to me which has really helped me keep flares in perspective, is that once you reach a level of healing, no matter the intensity of the flare, your body can, and will get back to that level.
These words of wisdom helped me because I could finally stop feeling as if I had gone backward every time I had a flare—that all the progress I had made had gone out the window. Instead, I realized that the flare was just a temporary hiccup, and that made all the difference! It enabled me to keep the alarms in my brain from going off. In a calm manner, I could then take my bag of tools off the shelf and do what I needed to do to take care of myself.
This was key for me, because I quickly learned that a negative response to flares could make the flare worse, and further aggravate my nervous system. So for me, it was really important to remain calm and relaxed during a flare. “Easier said than done” may be your first response to this advice; however, trusting that my flare was temporary really made an enormous difference in my overall healing process.
Since everyone’s symptoms are different, what worked (and continues to work because I still get the occasional flare) for me may not be the thing for you. Yet I still want to share the contents of my “flare tool box” to reflect how you can be proactive in overcoming a flare.
I’ve already mentioned the first trick in my bag, but because it’s so effective, it bears mentioning again. I literally take a deep breath and say these words either out loud or in my head. “It’s. Just. A. Flare.”
I wasn’t sure why this worked, so I asked Rose Hartzell, Ph.D., a certified sex educator and therapist at San Diego Sexual Medicine. Dr. Hartzell explained that, “you can look at these words that you say to yourself as ‘balanced thought’. You are not discounting that there is something going on, but you are also not ‘catastrophizing’ that it is something major to get worried about. You are trying to look at it as what it is.”
“There’s also some evidence from neuroscience that naming or verbalizing difficult feelings decreases some of their emotional reactivity—‘name it to tame it,’” adds Erica Marchand, Ph.D., a licensed psychologist specializing in couples and sex therapy in Los Angeles. “Pain often provokes an automatic emotional reaction, but if we can name it and think about it (what to do about it, what has helped in the past, how long it will last, how to take care of ourselves) it gives us more choice about how to respond.”
This balanced thought instantly clears my head, and enables me to go about the business of dealing with it. Take a look at the other tricks in my bag to see how it happens:
- Ice Pack: “Ice.” It sounds so simple, and it is, and to this day it still surprises me how effective icing is. It ALWAYS makes me feel better. What I usually do is call it an early night, line up a few of my favorite shows on Netflix or On Demand, and relax in bed with my trusty ice pack (a little chocolate helps too). Typically I’ll apply the ice pack to my hot spots for ten minutes or so. Take a break, repeat, and so on for a few hours until I fall asleep. And voila! Not only will I feel better in real time, I’ll wake up the next day feeling a remarkable improvement in my pain levels, especially my sit bone pain. (I want to acknowledge here that many people with nerve pain can’t tolerate ice. These folks benefit more from heat. Also, for many chocolate is a bladder irritant.)
- Stretching: The crystal wand has long been a tool that I’ve used for self-treatment. When I flare, I find that a gentle stretch with my crystal wand (which I keep in the ‘fridge, so it’s always nice and cool) will make me feel better both during the stretching and the following day. I am careful to use an adequate amount of lubrication (which I also keep in the ‘fridge). I find that the cool wand and lubrication help to cool the tissue.
- Medication: As I mentioned above, I have a physiatrist as a member of my treatment team, and she has given me specific medication to take in the event of a flare.
(Again, I want to reiterate that every patient with pelvic pain is different and while these tools work for me, they may not work for everyone. Except for the one below; that one is universal.)
- Boundaries: When you deal with a chronic pain issue, one of the things that happens is that you inevitably disappoint your family and friends. We all want to make the people we care about happy. It’s part of being human. But when I slip into flare mode, I know from experience, that just as important as the ice and the stretching and the medication are rest, relaxation, and keeping my stress levels as low as possible. So I’ve learned to be okay with turning down invitations or telling my husband that I need to have a quiet, relaxing day/night/weekend. Emails and telephone calls will inevitably go unanswered, and I’ve learned to be okay with that, even knowing that the folks on the other end might not be.
I hope this blog post has helped put flares in perspective for you. Healing from pelvic pain can be a roller-coaster ride, but learning to keep calm through a pain flare can really take some of the bumps out.
Please share your thoughts on flare-ups in the comment section below. I’d especially love to hear what tools you have in your “flare tool box”!
All my best,
Molly
Comments
You sent me a name of a therapist for my pelvic pain… I can’t find the email… It was a woman in Laffayette, La. Area.. Could you please send me ghe information again. Thank you Monica
Hello Monica,
I believe you are referring to Jacqueline Bravo. Here is her email address: [email protected].
Best,
Malinda
I stumbled upon this on day 8 of the worst flare I’ve experienced in close to a year , and my goodness did this help. Just this morning I was literally panicking about the catastrophizing thoughts you have listed on here.
I am curious though, I know I always flare from internal stretches within a few hours and it lasts for about a day or 2. Will this still help me if I am currently flaring? It’s been over 6 months since I’ve done any kind of physio, I know it’s bad, I just got used to feeling “normal”.
Thank you!
Molly: You did a fantastic job of describing this condition not only from a female’s perspective, but also from an athletic male suffering from this for over 5 years! Your advice is right on target and very well written. My physical therapist who specializes in CPPS and I fully agree with your advice! I wish I had know this sooner! BEST to all out there suffering from this, and if I can be of further help please let me know! “Remember it’s only a flare up!” Bill in North Carolina
It’s great to read these tips, have suffered pudendal neuralgia for 6 years,in mid of flare after Botox of nerve
Thank you so so much
Breeda
Molly,
This article spoke right to me. I felt like I was reading my own thoughts. Most people don’t understand pelvic pain as it is an invisible illness. It’s nice to know I’m not alone in this journey! I recently purchased the crystal wand from my physical therapist and have found great relief from it. Although, I’m not always sure I’m doing it right since it’s a bit awkward. Thank you for sharing this.
What a great article, thank you. I can also relate very much to turning the corner when I could say it’s just a flare. Besides some IC that’s up and down I’m not longer suffering from pain daily – I have/had PN and after two years of dedicated healing I’m much better. I’m writing this to encourage others. I’d also add I decides to listen to my flares and learn from them and I soon began to be able to determine connective tissue vs PN vs IC vs all of it. That helped me intervene most successfully and helped me feel empowered over my body. I’d also tell myself “this is my body” to comfort myself and negate the idea that I was body hijacked by sadistic aliens. Thanks for this article and thoughts to you all- you can heal.
Thank you so much for sharing your experience and for weighing in Amanda! It really does help so much to hear about the experiences of others! Not feeling isolated is sometimes half the battle! All my best, Molly
I am a man and suffer from pelvic pain tension myalgia. It was horrible when I was first diagnosed with it. The pain was so unbearable that I almost lost my job. Sadly and regrettably I did lose my wife and son. My wife was telling me it was all in my head and to just get over it and finally left me. I finally seemed to have kicked it and beat the myalgia after visiting a physical therapist, staying on my antidepressants, light exercising, and watching what I was lifting. I stopped seeing my physical therapist and thought those days were behind me. Unfortunately, there has been a lot of unavoidable stress in my life right now and I haven’t handled it particularly well. Well, now I have a flare up again as of 3 days ago. Originally, I had frequent urination,9 out of 10 pain, and bad constipation; but my pain is around a 5 out of 10 now, still cant wear tight pants of any kind,no frequent urination (it was like every 10 minutes before),and no constipation issues so far. I made another appointment with my PT again. Did I understand you correctly when you said if you have healed from it before, it can be easier to heal from the flares? Your body wants to heal? That is very positive news if that is the case.I was starting to sink into a state of depression again about it, but that gives me hope. I have been applying heat,doing the stretches out of the book “A Headache in the Pelvis.”and resting a lot when I get home. My symptoms right now also include a burning sensation, pain in the groin and sometimes through my hip and lower abdomen. I am trying to eat healthier and take a multivitamin everyday, along with Lexapro for my depression. I also take Ambien at night to help me sleep. Anything you could recommend for me to do before the physical therapist visit that would be beneficial? I keep hearing about self massage but can’t find any videos on much of it, or it really written about in very many books, as far as self massage with your hands. Does massaging the affected painful area with a firm but gentle hand yourself yield any benefits, or are the damaged tissues too deep for it to make a real diffierence?
I am so sorry to read you lost your wife and son over this.
I am in probably the same position as you symptoms/pain wise and it terrifies me everyday that my wife will leave me.
I had to stop working in 2012 because of this, it’s been a very rocky road for me and during the worst of it I actually thought I was loosing my mind.
Now I deal with the flares but usually manage to participate in a relatively normal life most of the time and I try to remain positive for my family.
This condition/disease what ever you want to call is so cruel but I will not let it rule my life anymore. Stay strong and keep fighting!
Amanda
What helped you most in healing from PN
Fantastic article. Thank you so much for sharing. I have short pelvic floor syndrome related to my hypermobility condition and I have the same pain and symptoms as you by the sounds of it (only difference is I’m a heat not ice person). I wish I’d read your article 25 years ago. I’ve been on a parallel journey. Not giving up to despair is the hardest part and your article and inspiring positivity is now in MY toolbox (along with 6-monthly Botox injections to pf, nortrptilin painkillers, hot baths/water bottle and tp manipulation). Thank you so much.
Dear HTem,
Thank YOU so much for your kind words! I’m so happy to hear that you have a full toolbox as well! All my very best to you! Molly
I like the positive message of this post, Molly, indeed pain can bounce back for a few days, when that happens I take an EPSOM salt hot bath and magnesium…however I do have different symptoms than most, for example I never had burning, but buzzing and electric shocks…
apart from supplements like Vit D and magnesium, amitriptyline was the medication that stopped the pain for me….it took 3 months, somehow I feel most give it up because of the side effects, but after the initial 3 months they went away as well. for the pain on touch I used lyrica and am now weaning off both medications.
I got my pelvic pain from repeated infections of the bartholin glands which still cause me a lot of problems.
Thank you so much for your comments Moi! I know our readers will find them very helpful, especially your advice about giving meds a chance to work and giving them time to get past the side effects! My pain also started due to a bartholin gland infection. I believe it to be an overlooked source of pelvic pain. It took my medical providers a year to find my abscess.
Many many thanks again!
Molly
::)what dose of amitriptyline worked for you?,how are u now did it ever come back when u stopped the meds?
Thank you very much molly for your insightful post. I have been dealing with major pelvic pain since a car accident a few months ago. And at times, it is extremely agonizing. Sometimes when it gets really bad, I become depressed.
I am still slowly recovering from this pelvic and back pain.
And I am slowly changing my outlook though it is very difficult as there seems to be less and less hope for
full recovery.
I will try and stay positive and keep your insights in mind. Thank you
I’m so glad that you found the post helpful! Yes, it’s so easy to become down and depressed and discouraged with the healing process. Be as kind and patient with yourself as possible and never give up on finding the best possible team of providers. That has made such a difference in my healing process.
Sending healing thoughts your way!
All my best,
Molly
Thank you so much for sharing this! This was very helpful and inspirational. I have had IC for close to 8 years, for roughly three years I had been symptom free but recently I have been experiencing some rather frequent flares that have been tough. I too use ice and find it to work great as wel, I also use a heating pad. Sometimese ice doesn’t always work so I do a combination of booth. I have also found that when I feel a flare coming on I try to eat even more IC friendly foods to help with relief.
Thank you so much Peige for your kind words and for sharing your own flare “tool box”!
All my best,
Molly
Really liked your article and helpful information. I hate to sound dumb, but I am very fuzzy on the stretching/crystal wand portion of your post. I have not heard anything at all even similar to this – what does it mean and how does it work? I put myself on a regimen of Vit. D, Calcium w/magnesium, COQ10, and most importantly Quercetin about 3 months ago and have had good improvement – I had read that these supplements were helpful in HEALING IC and they seem to be working. I have not had a flare even when riding in my husbands pick-up which before ALWAYS seemed to cause me to flare. I am hopeful I have turned the corner and have put the really bad times behind me, but like you, I know if/when one does occur, I just need to stay positive and take time to allow my body to recuperate from whatever triggered it. Thank you for taking time to post your information and thoughts, they are very helpful.
Dear Anne,
Thank you so much for sharing your experience! It is so wonderful to hear that you are finding relief!
To answer your question regarding stretching/the crystal wand; basically I had my PT teach me to treat myself internally using “the crystal wand” or “thera wand” as it is also called: http://www.amazon.com/Crystal-Wand-TheraWand-Essential-Clear/dp/B00C2AO2QY/ref=sr_1_2?ie=UTF8&qid=1415070925&sr=8-2&keywords=crystal+wand; I insert it vaginally and gently stretch my pelvic floor muscles. I do want to be sure and stress; however, that I believe it’s super-important to have a qualified PT show you how to do this because it may not be therapeutic for everyone’s symptoms.
All my best to you,
Molly
Like Molly, I also use the Crystal Wand. I grateful for the suggestion of keeping it cool. I will have to try that. Sometimes I use ice packs and sometimes I use warmth. It depends on whether I am having burning or I can feel the tension and need to completely relax.
I completely agree with Molly’s recommendation of letting your PT show you how to properly use it. Mine showed me several years ago and it really makes you more confident and safe using it. I purchased mine through Amazon also.
I was diagnosed five years ago and it took five months for me to start feeling better.I take the medication and stay on a strict diet. The diet seems to be the key for me. The flare ups are getting further and further apart.
Dear Phillis,
Thank you so much for sharing your own “tool box”! So happy to hear that you are finding relief!
All my best,
Molly
Can I ask what diet it is that you found useful? I am at my wits end and any information would be greatly appreciated!
Hello Tiredofbeingtired,
There is no specific diet that can cure pelvic floor dysfunctions, but being mindful of your caffeine intake, and staying away from unhealthy foods can help minimize some of your symptoms. Also, as I have mentioned in my blog post, what may work for me, may not work for others. I would strongly recommend that you see a local PF therapist who can help tackle your situation.
Warm Regards,
Molly
What kind of diet are you on? I would love to know. I have adhesions and need to find some kind of relief.
Loved the title of your article for indeed there is sometimes a feeling of helplessness as we go through these flares. I too found amitriptyline along with other meds really helped. It erased almost all the burning I was experiencing. The dosage I’m on is only 50mg and I dislike the weight gain BUT I feel I have my life back! So don’t be afraid to try these options. And I am a heat person also and use a home made rice towel placed in the microwave for 2 min. Very soothing. Great article!
Thank you SO much Priscilla for your kind words and for weighing in! It’s so great to hear that you have found relief with amitriptyline. I am actually thinking of adding it to my “tool box” so so glad for your feedback!
All my best,
Molly
Hi I’m Rhea I’ve been experiencing pelvic pain syndrome since I was 15 years old by the time I was about 18 or 19 I was finally diagnosed with chronic pelvic pain syndrome , interstitial cystitis, dysperunia,dysmenorrhea, vulvodynia, and possible pudundal neuralgia I’ve had painful periods and excruciating painful sex it’s become unbearable but I finally found a doctor and wonder nurse practitioner who help me with medicine and controlling my diet for my IC condition. I had a laproscopy and had my bladder enlarged which helped a lot. I still have pain some days worse than others or sometimes better my main thing I believe is watch my diet and just deal with the rest of the pain I know it cannot go away by medicine physcial therapy did not help at all for me sometimes I stretch my muscles and that helps or I just try to relax my pelvic floor muscles my main way to deal with this is me going to school to become a nurse practitioner or a nurse and help women with pelvic pain like us and try to do something about our awful conditions. I’ve tried to convince my doctor to hire me but he’s unconvinced it’s frustrating I think because I’m not finished with college. Anyways I’m so excited to see other women sharing their stories please continue the more shorties shared the more we will learn about this awful disease pelvic pain. I want to dedicate my life to finding the answer to it. Please feel free to message me through email or find me on Facebook!!!! Sending love xoxoxo Rhea Franklin
Email: [email protected]
Dear Rhea,
Thank you so much for weighing in! And for sharing your story and how you cope with flares. It’s wonderful that you are channeling your experiences into a desire to help others!
All my very best to you!
Molly
Thank you for this great post Molly. It is going to help a lot of people. Your experiences definitely match the ways I healed from pelvic pain. Just like you I consider myself a success story even though I have an occasional flare up of my symptoms and your post has clear, succinct advice. Over time, I have become aware of the mind/body connection related to my flares. My pain often signals me when I am stressed and I don’t feel safe. By looking within (and sometimes with help) I can often discover my underlying emotions/thought patterns/beliefs and with this awareness I can turn them in a positive direction. This process helps calm my whole system. I absolutely hate when my bladder pain/inflammation, pelvic floor tightness and nervous system ramp up and it is easy to slip into fear. At these times, I remember that the pain that has pulled me out of my life has also signaled me to get the most out of my life. All the best to you on your healing journey..
Thank you so much for your amazing input Mary! I believe it will also help many readers! So well said!
All my best,
Molly
Hi Mary Ruth, Thx for posting. I am exactly the way you have described. My stress and fear have gotten in the. way of my healing (big time!) I see a counselor, who is very good, but it hasn’t helped much. I must get it through my head that this will. not be my life forever and that I will be able to sit again without terrible pain, and also walk away from the toilet even when my bladder still feels a bit un-empty. etc. I started to read ur book but haven’t had a chance to finish it.. Ive made progress towards healing but my own stress , and my fear of holding my family back from living etc..are keeping me stuck… I. hope that I can learn to stop this and make the progress I need.. Thx so much for posting.
I have had IC for 3 years. I have had time that are better and times that are worse, but it has never gone away. I am getting married next year and have a gorgeous dress that I’ve wanted my whole life. It is also very form fitting with a corset back. I typically don’t wear really constricting things because of my IC. Since it’s my wedding and the dress that i am in love with, I got it. Any suggestions on how to prevent having any flare ups? I’ve heard Elavil helps with the pain and I’ve considering trying it. Any other suggestions? Thanks.
Hi Shannon,
I would definitely recommend that you talk to a pain management doctor. It took me more than a year to visit one, but being under the care of one really was a turn around for me as far as getting a quality of life back. I too have heard positive things about Elavil, and am actually thinking of trying it myself.
All my best,
Molly
Is a pain management doctor through a urologist? I feel like a lot of these doctors are really unfamiliar with IC and don’t help much.
Hi Shannon,
A pain management doctor is typically referred through a primary care physician; however, either a urologist or a gynecologist could also refer. Here are a couple of articles with guidance on how to find a pain management doctor: http://www.everydayhealth.com/pain-management/do-you-need-a-pain-specialist.aspx and http://www.webmd.com/pain-management/guide/pain-clinics-overview?page=2.
All my best,
Molly
I learned something tonight, I believe I had Bartholin gland infection. No Doctor identified it, but what was described was exactly what happened to me. It was very painful, and I had many cysts. This knowledge is a relief to know why that happened. Thank you for sharing.
So glad you found the post helpful Elizabeth! I do think Bartholin glands are often overlooked as a contributor to pelvic pain!
All my best,
Molly
Thank you for sharing your experience, it is really helpful. I would like to share some precautions that I do with you which helped me control the pain.
I always start my day with 2 cups of water, then after intercourse I wash myself with Dead Sea salt and water and again I drink a lot of water afterwards. I do not wear tight pants or jeans anymore. I buy maternity pants they are very comfortable and looks good.
I hope this would be helpful.
Nancy
Thank you so much for the kind words and sharing your “tool box” Nancy! I LOVE the idea of the maternity pants! I am going to steal that one from you!
All my best,
Molly
Thank you for your encouraging article. I had to learn all that you said the hard way. When my pain started 7 1/2 years ago – out of the blue – I could not find anything on the internet that was helpful like this. I’m glad to find out that there are some resources out there now, and that people are finding ways to heal. I’m in PT and have been for 5+ years. I find that it helps me as a way to manage my pain. I know it is expensive for most, so maybe not for everyone. But it helps my burning and stabbing pain. The pain that only responds to relaxation is clitoral pain. I went to a chronic pelvic pain clinic in CA run by David Wise. It is an enormously helpful week-long clinic for people with this kind of pain. Jon Kabat-Zinn and others also offer relaxation “tapes”/recordings that work well for maintaining composure EVERY day, not just during a flare. Thank you again!
Thank you so much for your kind words and sharing your experience Amber! So happy that you are finding relief!
All my best,
Molly
I was diagnosed yesterday. As I read about this condition it is hard not to feel absolutely hopeless. It feels like my life is over, like I can never be away from my bed or bathroom again and the urgency pain has been at a level 10 for over a month. I feel like I’m loosing my mind. I feel like a bad wife, a bad mother, and less than human because I can’t even stand having anyone even touch me. I hope someday I can share a story as positive as yours but right now it is very hard to see the forest through the trees.
Dear Michelle,
I’m so sorry about all that you are going through. Please believe me when I say you WILL get better! I have been you, and I know exactly how you feel! Here is some more advice for what it’s worth from someone who has been in your shoes: surround yourself with support. Don’t be afraid to tell your loved ones exactly what you just wrote here. It’s impossible for anyone who hasn’t dealt with chronic pain to know what it’s like, so it really does mean that we have to communicate what we need and never expect those around us to just “know”; this was perhaps the hardest lesson for me. And the one that took me the longest to “get”! I myself felt the seriousness of my situation and so I assumed that those around me would automatically get it too. And when they did not, like when we would have family in town and they would have all these expectations of being entertained (I came down with my symptoms one month after moving from NYC to a gorgeous beach town in California, needless to say, all of my family/friends were eager to visit!) and were not understanding of my limitations, I would become so disappointed and angry with them. But now I get how hard it is for us as human beings to really get what people with chronic pain are going through. We’re so used to having certain expectations of our loved ones and the people in our lives, and when there is an “invisible” condition, or a condition that doesn’t have special ribbons or fund raisers, our human brains often have a hard time computing, “Oh, she’s in distress and needs me to act this way not that way.” But I found when I did articulate my needs to those around me, the people that really mattered stepped up. Also, look for support from others who have been through it. Invaluable to me was a Yahoo message group called “Happy Pelvis” it was actually started by one of PHRC’s former patients and now is moderated by a wonderful woman named Tiffany McDonald. HP is a very positive group, so not like some online that can really bring you down. Steer clear of those! Also, be sure you are managing your pain. The day I began to get the right PT coupled with the right pain management was the day everything turned around for me. And lastly, try as hard as you can, because I know it’s not always easy–this is one I also really struggle with to this day–to cut yourself slack! You are NOT a bad wife and mother! You are a person that has been hit with a very challenging health issue. Period. I learned to change the conversation in my head when it comes to this issue. I began to say to myself, “Jeez, you were able to pull such and such off even with the pelvic pain issues you’re dealing with! That’s pretty amazing!
Again, hang in there! You will get better!
All my best,
Molly
Please do not lose heart . i felt and sometimes still feel like that but it is NOT true. Get to a Dr. That knows this disease.. And talk to SOMEONE who has or is going through this. Remember when you first had children you may not have thought yoi could do that either… But because of your expectations of yourself as a mother sounds as if you are good at that. Hang on…. There is help!!! Vicky.
/re the article about Freaking out during a flare- this may be a dumb question but what does Molly mean when she uses a crystal wand and the stretching? Is this vaginal or is she stretching her urethra. I am confused. Thanks
Hi Margie,
I dont think Molly was referring to Urethral stretching but rather pelvic muscles.
Best,
Allison
How often should a “crystal wand” (or I have the therawand) be used at home for maintence? It seems to help when I’m really tight but I’ve found that it can easily make me sore or even flare if I’m not careful. Maybe I am using it too much or being too aggressive?
Hello Faith,
The frequency will depend on your findings, and your symptoms. I would suggest minimizing the frequency of self treatment that you are currently doing. I also want to advise that self treatment always works best in conjunction with specialized treatment from a PF therapist.
Best,
Malinda
Thank you for this article. I have shared this post with family & friends as it gives us all some hope. I have been in the world of pelvic pain for 4 1/2 years. 2 1/2 seeing a pelvic floor physiotherapist. I have had multiple things going on….vulvodynia, muscle spasm (both of these have mostly cleared up but I do have a lot of flares, I had 2 rounds of botox for the muscle spasm) & now I have a painful spot fairly deep in the pelvis that seems to be fascia that is sticking between the bowel and the vagina wall. This could have been the starting point of my pelvic pain. My pt is trying to release this which makes sense but seems to involve an increase in pain for now. Anyone else have or heard of this fascia problem? I also have a couple of small nodules or calcifications in the vagina which I have been told cannot be removed. I did the meds for pain for about a year and a half but became sensitive and am unable to take them any longer as they make me feel worse. I use a tens unit for the pain….really helps take the concentration away from the pain.
Hi Lou,
It seems that you are referring to possible connective tissue restrictions can create the pain you’re experiencing. Pelvic physical therapy can cause some discomfort for certain patients, but it should never cause excruciating pain. If you would like, I can recommend other therapists in your area who may be able to give you a second opinion.
Best,
Stacey
Thank you for the pragmatic and positive perspective. It’s been and still is up and down for me. I’m not attending Christmas dinner at a busy restaurant on Saturday with my dad and sibs. I cannot sit for more than 20 minutes, eat restaurant food, the 30 minute drive to get there will flare up the pudendal for days, and have been advised by the doctors to stay away from crowds because my immune system is very compromised. My family is disappointed and 2 of them are vocal about how I’m letting dad down. My dad is angry. How you managed to get to the point of being able to disappoint and not feel guilty is where I want to be. Any tips for how you came to peace with that would be very appreciated. All my doctor advises is to hold my ground, and that it’s their problem. That may be true, but I feel even more isolated and depressed. So…how did you get there???
Hello Brenda,
Are you currently seeing a pelvic floor therapist? Do you have a pain management doctor on board? Are you seeing a psychologist? These are all very important steps that you can take to ensure that you are not only “coming to peace” with your situation, but that you are also being proactive about your health. I would like to recommend a local PF therapist. Where are you located? All my best to you.
-Rachel
Dear Brenda,
I completely understand how you feel! It’s SO hard to deal with having to disappoint others b/c of your pelvic stuff! Your comment really got me thinking and so I wrote this blog post in part to answer your question! Please give it a read, know you’re NOT alone and I hope it helps!!! All my very best! Molly
https://pelvicpainrehab.com/pelvic-pain/2523/survive-holidays-pelvic-pain/
Thank you so much for your words of wisdom. I have not been diagnosed with anything and my symptoms can have months in between. They came back with a vengeance today and all I could do was curl and crouch and stand and sit and cry through it all. But that simple phrase: It’s. Just. A. Flare. Helped me so much I don’t have the words. Thank you. I’m looking into your experience and others on this blog and you’ve given me hope. If I could hug you I would! Bless you, I have been searching for answers for 5 years now and the concept of no pill, surgery or quick fix…thats all I’ve thought was out there – just looking for the right “diagnosis”. So again, I thank you and God bless.
Thank you, Molly, for this well thought out and insightful blog!
My own personal experiences with numerous health issues since my early 20’s has taught me how important coping and self-help strategies play into dealing with the complexities of any chronic condition. Denial, fear, anger, depression, anxiety…are just a few emotions felt as we struggle to come to terms with what has happened to us. Many times we will not be able to receive a definitive answer to “what” caused the condition. How frustrating!! Eventually being able to let go, accept and embrace who you are now becomes essential to healing and moving forward.
As a physical therapist specializing in pelvic pain, I always remember my own struggles and successes as I guide my patients on the road to recovery. I embrace your thoughts and insights whole-heartedly!
Thank YOU Marci for the kind words and invaluable input!
All my best,
Molly
I had prudential nerve freeing in 2007..but because of massive walking.my prudential nerve and buttock are totally inflamed.This is the 2nd time this has happened.This time it’s the worse.What do you recommend I do.Will resting for a month resolve the situation or do I need therapy
I am a male
Hi Jeff,
We recommend being evaluated by a pelvic floor physical therapist. The link below can help you find one in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
I read this article in the middle of the night as I recover from yet another painful flare. I’ve been dealing with these for just over a month, the first one sending me in to see my doctor who in turn sent me to ER. I still have the same pains but no diagnosis. Thank you for sharing your encouraging story. I was beginning to think maybe I was losing my mind. your articles have helped put my mind at ease again!
Hi Lucy,
We are so glad to hear that our blog helped you! If you have not yet found a pelvic therapist, I’d like to offer you a few recommendations. Where are you located?
All my best,
Casie
This is the best article/blog I’ve read since being diagnosed. Annoyingly I had a flare up this week and it totally rattled me! You’ve confirmed that I am on the right track and I can totally relate to everything you said. Thanks to you next time I have a flare up I’ll be better equipped to handle it.
Thanks again!
Xx
Hello Skye,
Thank-you! We are so glad to hear that we’ve helped.
All my best,
Stephanie
I am a 65 year old male and I was diagnosed with Levator Spasms in 1993 by a colon rectal doctor. I have taken a lot of different medication but nothing works. Have tried EGS and physical therapy and they didn’t work either. I think I have Pudenal Nerve Entrapment and that would mean I would have to have surgery to correct the problem. The cure rate is only 30% and 70% stay the same or get worse. Not very good odds.Any help will be appreciated.
Hello Joe,
I am sorry to hear about your situation. Perhaps seeking a different opinion would be beneficial for you. Where are you located? I may be able to offer a few recommendations.
Best,
Liz
Thank you. Thank you, thank you, THANK YOU for this post! I can’t tell you how much I needed this at the moment. In my case, it’s abdominal/pelvic adhesions, to which I have had physical therapy sessions for, both though Clear Passage and a private therapist. Every time I have a flare, I’m just certain therapy didn’t work, won’t work, was a waste of time, of money, on and on. And I start blaming myself, what am I doing wrong? I even asked my therapist that. She assured me I wasn’t doing anything wrong, to just keep going, and it will help. I never once thought I’d still be having flares. I am today. Just got back from therapy from an out of town expert, and today I feel like I was run over by a Mack truck. I’ve spent today (and the last few days) upset that this just isn’t going to work. Your blog post was like a light in the darkness. And I can’t thank you enough. It’s. Just. A. Flare. No reason to travel that downward spiral.
I would have loved having ANYTHING on the net when my pelvic pain began!! This blog is a real
blessing…..!!!!! Thanking all who are involved.
Thank you so much for this post! It is very encouraging.
Thank you for taking the time to share something that I needed to read at this very moment!! I always have hope, you have given me more??. I am very sick, am a personal trainer and private yoga instructor and 3 kids, 2 of them teens. I found an amazing manual physical therapist, but at the moment I have been given orders to stop all exercise so I bought a therapeutic yoga trapeze. Hopefully it will help with the inversions, giving relief to pelvic and spine. Magnesium, epsom cedar baths( 100%) free of chemicals and the biggest is meditation and staying as stress free as possible…hard to do with teen boy in high school and I love him?. I feel guilty laying down a lot because the kids can’t see my sickness so they don’t seem to get it. Mine is nerve related and a muscle now, pfimoris pinching my sciatica on right side. Prudential neuralgia among other neuralgia. See I got this little virus called Mono. No big deal right? Big deal at 38 yrs. of age it has taken over my nervous system in 2010. I feel afraid i will end up alone and not doing what I love….fitness and spending quality time with family. This flares can last almost a month.
Thank you for this wonderful post. I’ve had IC for about 14 years. It’s well managed and I live a mostly normal life. For my bladder symptoms…I’m in that same “it’s just a flare” headspace.
But I’ve had a miserable pelvic floor flare (think giant constant muscle spasm down south) for the last week…which I haven’t had in nearly 7 years. I spent the first five days freaking out…panicking, falling into the Dr. Google hole, crying, etc., which only makes it worse.
Then I had the lightbulb moment that I’ve had this before and it’s gone away….and there are different types of IC flares and I’m just having a pelvic floor flare. When I realized this, my stress level dropped significantly and I finally chilled out. Then I found your article and it was exactly what I needed to read at the moment. So I’m taking my pain meds, using ice,and giving myself a break. It’s just a flare.
Thank You this is just what i needed to hear i am in the middle of a flair and was trying not to freak out. The first thing i think is here we go again. Just saw my doctor last week all was good them bam here we go. This will help me slow down and think,it”s good to know this happens to everyone and i did not do anything wrong. Those words it’s just a flair will help me relax a bit more,and take what i have learned from my doc and pt knowing i can fix it.
im 17 years old and was diagnosed with pudendal neuralgia at age 11. being as young as i am, has made treatment and pain management really difficult. i just wanted to say I’m currently struggling through a flare and this post has just opened my mind and helped me relax. I’m currently on daily medication but i was just wondering what tablets/medication people take when their flare ups are unbearable. at the moment i just lie in bed and cry and its not very affective. i know sleeping tablets are my last resort emergency (I’m really not keen on this coping strategy) but id like to know other options. please if anyone sees this help a girl out xx once again thank you for your post i really can’t thank you enough xxx
Hi! Thank each and every one of you for sharing and being warriors in this fight. I was born with an underdeveloped urethra and had dilutions as a very young child. I had lots of UTI’s upon becoming sexually active. Everything settled down and I remarried the man of my dreams and retired. 7 months after retirement, my health deteriorated dramatically. I’ve had Botox in my bladder (had to cath myself), Botox in the pelvic floor, steroid injections in my back, surgery to remove pelvic mesh bladder sling, 3 rounds of physical therapy on my pelvic floor and bioidentical hormone pellets implanted. I have tried every antidepressant, muscle relaxants and have lived on ice packs (even have cooled seats in my car). I was suddenly symptom free for a year. Previously was symptom free for 8 months. I have lost my part time job due to this. My sex life is non existent. Tonight, just reading these words calmed my body. The flare began last night. I have been miserable all day and have just thought of going to bed and stayin there. “I will get through this. It’s just a flare.” God bless you all!
Hello Liz,
My name is Katerina. I live in the Virginia Beach, VA area, and I have tried a few PF physical therapists, but I have not been able to fully recover (my last one helped me the most, but did NOT want to do internal work on me, and insisted on discharging me after 15 weeks). So now, I need a new one. Do you have someone you could recommend? Thank you!
Hi Katerina,
Please use the link below to find a pelvic floor physical therapist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Thank you for sharing this. I just spent an hour crying in a hot bath that it’s never going to get better, that I am back at square one. And sometimes the pain is so bad I feel like it must be something that no doctor is seeing. Something really really bad. And I go down this spiral and get very very dark. Reading your post and all these responses was so comforting to me. Just to feel that I am not alone. That others are going through this and learning to manage it. I tried the ice and it was very helpful. I have also been able to calm down flares with Valium suppositories that my urogyn prescribed.
I am so grateful for kind people like you who take the time to help others. Thank you.
Thank you for your information, I’ve been seeing a pelvic PT for 6 weeks now and I get very upset when I have a set back. I will not use hormonal creams due to breast cancer in my family. I really don’t want to take the Mede that cause weight gain as I struggle with this my whole life..I do the daily stretch program and every am use the dilator which has helped somewhat.Can anyone recommend a good pillow to use to sit on in cars or planes.?Any diet suggestions would be very helpful. I prefer to do things as naturally as possible. Yesterday my PT told me about vaginal Valium. Anyone have any success with this?Any additional suggestions would be highly appreciated.
Hello,Great,M huge fan of you.
I think ur blog just saved my mind!
Finally someone whose series of events is like mine! Thank you
It. Just. A. Flare. WOW, such s imple 4 words that carry such a powerful and reassuring meaning!!! I love how you also state that even though the people on the other end of the unanswered calls or messages may not be pleased, and you have to break plans, well, that’s just the way it is. This is the hardest for me. My husband doesn’t get it, my stepkids do to some degree (we make the most of it by movies in bed or coloring or just good ole girl talk), and my parents/sisters/long time friends get it. It’s the newer friends that assume I’m just flakey and I’ve lost many of those friendships, which is unfortunate, but when the flare is over and I circle back around, often they are still there and I can explain to them my challenges. If they become part of my support system, awesome, if they can’t understand it, that’s ok, too! Thank you very much for the reminder that just because we flare, just because we can be briefly (or hopefully not so briefly) down and out, it doesn’t mean we are any less vital than those who are more fortunate! The one silver lining I always think of is how deep my empathy is now for those with issues (really helps because I’m a RN) and how I can stick with them, even by sending a little card or email, just for them to know that my concern and love doesn’t change just because they are sick or It’s. Just. A. Flare!!!
Thank you for putting this simple blog into such meaningful words. You, my doll, have a real gift!!! God bless you!
Incredible post.
This article has helped me so much (as it has for so many others)! I’m new to this world of pelvic nerve pain and it means so much to know I’m not alone. I’m having the biggest flare I’ve experienced so far and it had me saying “great I’m back to square one- all progress is lost” but I’m stopping that right now. I know that positive thoughts are a huge part of this battle of wellness. I’m going to my primary care tomorrow. I’ve been on gabapentin for few months but since I started it with so many other things (PT, yoga, counseling & acupuncture) it’s hard to know what’s working! Last night I felt like I needed to wrap my body in ice the fire was almost everywhere. Tonight I’m trying hear which seems weird but maybe I’ll sleep better. Thanks Molly & all who commented. We are not alone.
thank you very much for the tips
I have been dealing with PFD for approximately 6 years. I’m not much of a computer person, due to vision issues, but wanted to find a blog written from a patient’s perspective vs. a medical practitioner – someone who deals with this personally. Your article provided much valuable info — some reinforcing, and some new. I am very interested in info re using a pelvic wand, which I just purchased. Press & hold, or move slowly over the muscles? I would be very interested to read some of your earlier blogs….how do I do that?
Hi,
I am new to the pelvic pain world which all started after a very routine non invasive pelvic procedure. It has been going on for 6 months now and I feel so hopeless. My pelvic tightness has now graduated to PN and most days I question living. I have tried medication, Pelvic Pt, and just did Botox last Friday. I tend to catastrophize everything. 1 step forward 5 steps back every time I feel an inkling of pain or weird nerve sensations. I have lost everything due to pelvic pain. My relationship, my job, my home, and has even caused a rift in the relationship with my family since they are unable to understand it. I am under 30 yrs old and I cant imagine living the rest of my life with this. The internet is a scary place and I never see success stories especially with PN. But I am thankful to have come across this.
Hi Jessie,
Let us start of first by saying that your experiences, the pain, frustration and lengthy journey to treatment, everything you have felt is valid. We understand completely that having PN can be debilitating and it takes its toll on your mental health. We want to help. Secondly, let us link you to a success story so you can read through others experiences. Third, if you would like another try at your family understanding PN, show them this! We broke it down, including myths about PN. If they still don’t understand, we even have a video about it. Additionally, if you need more resources, click here for a list of them for PN.
Please don’t hesitate to reach back out to us if you need any other resources or support.