Urogynecologist brushed me off, now what?

[u/pastelrays]

I went to a highly recommended Urogynecologist/pelvic pain specialist the other day for burning pain on my vulva that’s been happening for about 7 months now. It just so happened that when I went, my symptoms basically had disappeared, so I was just recounting everything to her. She diagnosed me with vulvodynia, recommended a lidocaine aloe cream, and told me to come back when my symptoms started again so she can take a look. I told her I was diagnosed with ureaplasma parvum by my gyno and took the proper rounds of antibiotics. She chastised me to the max, stating that it was an STD, only to later say that it could be natural occurring. I let her know that I hadn’t been intimate with my partner for months before I had the onset burning. She said “well you got it from somewhere”. She said I didn’t need therapy because my muscles aren’t tight and she didn’t see a reason to upon her exam.

Fast forward to yesterday, symptoms return. I call the office. Front desk lady barely lets be speak before saying that I was recently there and need to give it time. I told her I’ve been treating this for months and was told to call when I had a flare up. Front desk lady also told me to test myself and my partner for STDs. Eventually she contacted the doctor and she said she will no longer be treating me, that now it’s pain management and I would need to see a neurologist. I’m going back to my primary care this week, as she’s the only one who’s been supportive this whole time.

These are my symptoms, in case anyone has similar:

*Burning pain in surface level of vulva, radiates between urethra and clit, and forchette. Feels like someone holding a nail file to my skin.

*Burning alleviates when using lidocaine/benzocaine sprays.

*Minimal/no burning when standing, laying down.

*Not affected by bladder irritants.

*Never any pain inside, insertion isn’t painful.

*Alleviates during period, gets worse 2 days before.

*I can sometimes “think it” away, but it’s never permanent.

*Yoga and exercise helps immensely.

*Showering feels like I “restart” the pain.

*Pain has gone down, about 75% from when I started.

Things I’ve tried/been tested for:

*PELVIC MRI inconclusive

*Transvaginal ultrasound inconclusive

*Xray of spine inconclusive

*Pcp prescribed topical gabapentin, waiting for it to be delivered

*Negative for all STDs except ureaplasma, which I treated.

*Tried steroid cream with no success.

*Aquaphor/balms really don’t make a difference.

*Switched to fragrance/irritant free everything.

*Hormone levels are normal.

*Frida postpartum spray gave me the most results, I was actually back for normal for 4 days for the first time in months, but has taken a while to help again.

*I still haven’t cancelled an upcoming PT eval despite what the specialist said.

I’m feeling at a loss right now on what to do. Any advice helps!

[u/KristinaMarie1027]

Read this post from Haunted_Marie13. It changed my life:

Vulvodynia can be a Mind Body Syndrome: A Different Healing Method

So, a couple of weeks ago, I posted my success story about healing from vulvodynia/pudendal neuralgia using mind body syndrome healing techniques. I got a lot of messages and comments asking a multitude of questions, so I decided to make a post about it.

My Symptoms;

• Burning at entrance of vagina

• Burning with urination

• Itching around labia

• Tailbone pain

• Odd nerve sensations around vulva; i.e. tingling, odd pressure around urethra and clit, cold sensations, hot sensations, pulsing, stinging, and sandpaper like feeling.

My symptoms kicked off with an initial insult. I had a UTI which led to a YI due to antibiotics, and when I used 3-Day Monistat, crap hit the fan. I had a terrible allergic reaction to the medication, even though I had used it many times in the past, this time I actually sustained chemical burns from it. This led to constant burning pain and PFD for a little over 8 months before I came across TMS, Tension Myositis Syndrome. I learned that our brains are the epicenter for relaying pain messages from our bodies. When we hold our hand over a hot stove, our nerve fibers send a message to our brains to move our hand before we cause damage to ourselves. Pain is a danger signal that let's us know that something is going on and to either move away or take it easy before we get hurt. Pain does not always mean there is something horribly wrong with our bodies. Like when you get a papercut, It's such a small injury but it hurts really bad.

However, sometimes that danger signal can be left in the "on" position and cause pain to become chronic. Our brains can learn pain as it can learn anything else, and unfortunately this is how chronic pain begins.

For example: I had a bad reaction to monistat. I went to a doctor who was not empathetic in the slightest about my pain, blamed me for it, and continued to misdiagnose me with a STD that I did not have. Within this visit I understood 2 things: She doesn't know what happened to me, and she's blaming me for "doing this to myself". It wasn't until 5 doctors later that anyone actually listened to me and suggested that I had chemical burns. By this point, I had constant burning, extreme fear and despair over my symptoms, I was spiraling. Sadly, the fear and attention I was feeding my symptoms had made my pain chronic. I was traumatized by this experience as well, which I held that stress and fear in my pelvic floor, causing it to involuntarily tense up and lead to tight muscles which caused oxygen deprivation to the area and resulted in pain. So, emotional upset > tense muscles > cut off oxygen/blow flow to pelvic floor > pain. See how emotions can affect pain? The more anxious and scared I got, the worse my pain became and I started to develop more symptoms over time which caused more anxiety and more pain. It was a vicious cycle.

How did I heal? I came across TMS by accident and at first I shrugged my nose at the concept, but then I began to notice weird things. My pain would flare in mornings, go away during the day and come back at night. My pain was inconsistent and sometimes be a 3/10 and others be a 10/10. I also had a breakdown moment and scream and cried until I felt "empty" like all the repressed emotions I had finally spilled out of me, and I was pain free for a week after. I also had a 9-da book cure after reading Alan Gordon's book. From this, I learned that my pain stemmed from my fear surrounding my symptoms long after my vulva healed from the chemical burns because my brain learned and memorized that sensation. My brain also associated that sensation with my fear and anxiety, so anytime I got anxious or scared, it would flare up my symptoms. Through TMS healing techniques, I ended up losing my fear of symptoms. I started viewing them as a protective guard dog because they cropped up when I was fearful or anxious and wanted to warn/protect me. I stopped paying attention to them, slowly got back to exercising, sitting for a few minutes at a time, and wearing pants to prove to my brain that I was safe and okay. When a flare would come about, I met it with compassion and understanding, and utilized somatic tracking. Eventually over time and with gentle exposure therapy and somatic tracking, I healed. I had to retrain my nervous system and brain to not expect pain when I did certain activities because after a while my brain perceived danger with things like sitting, touch, and even urinating.

Tension myositis syndrome (TMS), also known as tension myoneural syndrome or mindbody syndrome, is a condition that causes physical symptoms that are not due to structural abnormalities. TMS is caused by emotional tension that signals the brain to reduce blood flow to the body, which can lead to oxygen deprivation and pain.

A good example of a mind body pain cycle would be phantom limb syndrome when a person can lose a limb and their brain sees that missing limb and will cause a pain response due to that missing limb. So amputees will swear that they can still feel their missing limb. The pain is very real and it’s because our brains are in full control of our pain response.

How do we know if our pain is brain/nervous system/TMS related? I will tell you.

Here are some questions to think about as structural pain behaves differently then neuroplastic (TMS) pain/brain pain:

• Have you had test after test and everything always turns out normal?

• Has structural causes been ruled out?

• Do your symptoms move around (You get an itch on your pelvic floor, then your glute then your leg?

• Do your symptoms come and go? (They are better in the morning but worse at night/vice versa; they happen before your menstrual cycle but are better during your menstrual cycle; they seem to vanish when you're distracted or on vacation, etc.)

• Do your symptoms seem to vanish when you're sick or have something else going on in your body?

• Are your symptoms inconsistent? Is the pain 1/10 sometimes but then they're 7/10 at other times? Do they change location?

• Do you have other possible mindbody syndromes like stress headaches, IBS, anxiety?

• Does your pain ebb and flow with your emotional state?

• Did the symptoms start out of nowhere? You just woke up with them one day?

• Did they start with a physical injury but you did not heal within the expected amount of time? (6 weeks to 3 months)

• Are doctors unable to find a cause for your pain?

These are things that are indicative of mindbody syndrome/TMS. Structural pain does not behave in the way described above. I am going to include some learning resources as one cannot heal from TMS without educating themselves about pain science and TMS. This is not a magic pill, it does take work. But! You can heal from this. Once you begin to unlearn the pain, it will fade. Once you take away the "I'm sick" or "I'm broken" narrative and replace it with empowerment, the pain will fade. If you deprive the pain of fear and attention, IT WILL FADE. You will heal. I did and you can too!

I hope that this post helps you! I really truly do and I apologize for it's length. I want you to recover. It doesn't matter if you've been in pain for 6 months or 15 years, you CAN heal and I don't want you to give up or lose hope about that. You can use these techniques and this knowledge for virtually any chronic pain condition as it can also help in pain management. I wish you an easy road to recovery.

[u/Competitive-Net1603 → u/KristinaMarie1027]

I love this so much! And can relate so I hope OP finds some hope and help from your in-depth post. I haven’t heard of TMS thank you for sharing.

My Vulvodynia originally occurred from reoccurring UTIs while in an abusive relationship. Even once the relationship was over I continued to get UTIs whenever I was sexually active and eventually they started to come back negative but I’d still have all the symptoms provoked by any kind of touch, such as jeans, sitting, alcohol, anxiety or stress.  It took over 10 years to be diagnosed with Vulvodynia and my urologist and gyno threw everything at it medication wise but then about 6yrs after diagnosis I started pelvic floor therapy every fortnight and she introduced me to the app Curable (life changing) she explained pain and tension in my pelvic floor to me in a way no one had before. This is not to say the pain isn’t real and all in your head, which lots of drs made me feel like I was creating this pain. Once I started doing inner healing through meditation, brain training, brain rewiring exercises and writing exercises along with educating myself about the connection between the brain mind and pain pathways that’s when healing took place.

I was pain free for a year until a dr dismissed my reoccurring thrush, ureaplasma parvum and occasionally BV for 2 yrs and it brought back ptsd from my past experiences of not being heard and believed. All the inflammation and pain eventually triggered the Vulvodynia to come back but this time in a different form and area.  at first i spiralled broke down and was in a really dark place for a couple of months. Once I got the right medication for all my infections I noticed the inflammation and redness etc calm down but I was still in immense pain.  i realised I was now dealing with hypersensitive nerves Vulvodynia/Vestibulodynia.

I slowly introduce the tools that helped me prior and signed up to the app curable again as I needed accountability and support. Someone recommended the book ‘you can heal’ I read the affirmations that relate to me daily. I got back to pelvic floor therapy which is really helpful especially if you hold any type of tension in your hips glutes or pelvic floor and also if you have any type of nerve pain because releasing the tension along with relaxation techniques and getting your nerves to respond to gentle touch in a safe way is vital. Slowly I’m healing again and I just have to remind myself healing is possible because I’ve done it before and I know what works for my body.

It always blows my mind how much trauma, our minds, self talk and brain pathways can determine how we perceive pain and how our bodies respond is linked to these chronic pain conditions.

I also found the book the body keeps the score so helpful.

Sorry for the long comment I just thought I’d share so OP knows you’re not alone and you can keep advocating for yourself until you find the right person to help you and that there are other tools that also help. Medication is vital when you’re dealing with chronic pain so don’t hesitate to push for pain medication if you find them helpful. You don’t have to push through it. I got told so many times to just soldier on or your tests are all negative there’s nothing I can see. I had to beg drs for diazepam after my pelvic floor therapist recommended it and it helps me so much when I’m in a really bad flare. I also had to go from 25mg to 75mg of oral nortriptyline and take antihistamines because I have a lingering itch that comes and goes. I found a naturopath and she helps me with adding in foods and supplements that help with inflammation and the gut/vaginal microbiome because getting to the root cause of the infections is of Importance too. Follow intimate ecology dr Moria Bradshaw on Instagram. 

I really believe in a holistic approach and finding what works for you. Just know there is a way to heal and it won’t be like this forever. I’m not 100% healed yet as I only started treatment in the last couple months but I’m also nowhere near as bad as I was 6months ago when it all flared up. Keeping a pain diary helps with keeping track of pain and symptoms for drs and yourself and you can track improvements what works for you what hasn’t. I know personally appointments make me so anxious so having questions and symptoms written down helps me advocate for myself. Because so many times I’d spend hundreds of dollars on specialist and walk out regretting not speaking up if they didn’t listen or give me space to talk. I’d also write a complaint to the specialist you saw who was dismissive of your situation. I’ve had to do this before when I ended up in emergency during this flare and they sent me on my way with Panadol and an antihistamine and told me to see a psychologist. I filed a formal complaint after a friend told me to do so. And that’s how I finally got someone to listen to me and treat all three infections.

I know this is a lot of information to take on board but I hope you get something out of it and it can get you on the right track on how to proceed with your healing journey.

[u/Keepwiththelearning → u/KristinaMarie1027]

Sounds like the urogynecologist I saw. I wonder if it’s because in their profession they want to do surgery mostly. That’s awful how you were treated. Let us know how the gabapentin cream goes for you. What brand of lidocaine are you using? I’m surprised it’s not irritating. I thought ureaplasma was causing the burning for me too, but I got rid of urea plasma and the burning still comes and goes. A urologist I saw who left the hospital and now has her own private practice said ureaplasma is not an std if I recall, but that it’s very common. That most people have it. I can’t believe she sent you to pain management. It shows that she does not understand this.

[u/KristinaMarie1027]

Read Alan Gordon’s “The Way Out” and follow his Instagram. If you can think it away EVER that is a good sign your mind is holding onto the symptoms. I had all of your symptoms and more. I’d say I’m 99% better now.

[u/Competitive-Net1603 → u/KristinaMarie1027]

His work is so helpful. He features on the app curable and I find his voice soothing not annoying to listen to lol if that helps. I’m a little picky when it comes to listening to someone speak so it’s an important aspect ☺️

[u/KristinaMarie1027 → u/Competitive-Net1603]

I agree!! I love listening to his voice.

[u/Competitive-Net1603 → u/KristinaMarie1027]

Glad to know I’m not the only one. I believe It makes a big difference.

[u/jennymay62]

I hope the gabapentin cream helps because it could be nerve inflammation in that area. I don’t wear anything that presses or rubs against that area. Just leggings, no jeans or coarse material. I also don’t use soap of any kind from my waste down. Acupuncture is one of the few things that has helped me. I have had a bad experience with a female urogyn also, at a major university. It’s really traumatizing to say the least. I use a cushion with a cut out area to sit on. My pudendal nerve is affected down by my vaginal opening, but sometimes the pain radiates upward into my vulva area. I’m in more pain if I don’t sit on the cushion. I hope for the best for you in finding relief from the pain.

[u/pastelrays → u/jennymay62]

Thank you so much for your response! I’m hoping we get answers/relief soon

[u/Fitzbar53 → u/jennymay62]

How do you go out to eat or to a movie? It’s so embarrassing to have to bring a cushion to sit on. I can stand and lay down but sitting is so painful. I feel like I’m stuck at home - even riding in the car is so painful. I’d rather lay in a hot tub 24/7. Any advise?

[u/Keepwiththelearning → u/Fitzbar53]

In the meantime diaper rash cream like Desitin will help it to go away for now until you find a treatment. You have to put a lot on but then you have to protect your clothing because it’s so white it will stain everywhere.

[u/Keepwiththelearning → u/jennymay62]

I had the worst doctor experience in my life at a university with a urogynecologist. I wonder if we saw the same doctor. I really do because I’ve had other medical issues in my life unrelated to this, and I’ve never had a poor experience other than with this urogynecologist.

[u/jennymay62 → u/Keepwiththelearning]

At Ohio State University Renee Caputo

[u/Keepwiththelearning → u/jennymay62]

No it was not there. I think a general Obgyn is good to have or urologist .

[u/Psychological_Math95]

Keep the pt eval. I missed my first appt bc I got my period and didn’t reschedule and now the wait is months. Have you tried estrogen cream. I have lichen sclerosis (allegedly never had biopsy) I have recently been in a horrible flare and started the loading dose of estrogen cream 5 days ago and today I feel almost normal. I’m thinking atrophy of the entrance has been a lot of my issue and I’ve been battling this burning and irritation since November 2024.

[u/TradeAutomatic6222]

Why is the receptionist giving health advice? Ridiculous

[u/pastelrays → u/TradeAutomatic6222]

Right? She read my chart and said that I have to do what the doctor said. I fought her on it and told her I’ve been dealing with it for months and I’ve been “trying” everything she said. So frustrating

[u/Wild_Organization546]

I was going to ask about Ureaplasma. My burning started after I had Ureaplasma.

First if your partner (s) aren’t treated there is every chance to get reinfected. Did you ever get a negative test?

There is a fact sheet on r/boricacid about how to test and treat ureaplasma.

Have you had a Microbiome test? You might even have r/cytolyticvaginosis which is very common after ureaplasma and also resolves during our period.

Lastly, ureaplasma is sexually transmitted and guys typically have no symptoms. It’s very common and most doctors aren’t really helping us with it. I still have burning to this day. But I have long periods where it goes away. I have it right now. Diprosone helps a bit. Diet probably makes a difference as mine flairs when I binge on junk food.

[u/pastelrays → u/Wild_Organization546]

Thanks for your answer! No negative test yet just because my gyno (who originally gave me the test) didn’t specify I had to get a follow up done. My mistake, I should’ve googled. I have appointment this coming week to do the test again. It was ureaplasma parvum. Partner tested negative when I initially tested positive. We haven’t had PIV since a few months before my onset of symptoms. We always use protection if that makes a difference!

[u/horse_oats]

Did you get tested to confirm the ureaplasma is actually gone?

[u/pastelrays → u/horse_oats]

Hi! I’m pending my appt next week to verify it is gone. Partner tested negative.

[u/Competitive-Net1603]

While you’re waiting to be seen by another specialist, I find tens machine really helpful for relaxing the pelvic floor muscles and reducing clitoris/urethral pain. I place the probe pads one directly on my mon pubis area and two below my lower back/top glutes on both sides. Start on a low setting for 30mins daily a pelvic floor therapist can also help with educating you on to use this for pain relief. Pelvic floor exercises you can google vagina whisperer has some good ones to follow and pelvic pain.org 

If you can handle lidocaine 5% ointment can burn at first but if your skin barrier has been compromised by treatments (happened to me with YI&ureaplasma) I could no longer use lidocaine which was shattering because it really did numb the pain even if it’s for a brief time. Any type of down training is really important. Nerve/pain medications and possibly Estrogen cream/pessary will help support tissue healing but just be aware if you’re prone to yeast infections that Estrogen cream bases most of them contain glycol/glycerin which you want to avoid as it can feed Yeast. I tried cream basis on two different occasions and both flared my YI so now I’ve been prescribed mi-gel which I haven’t started because I’m hesitant but have read really positive reviews on this sub. From my research an Estrogen pessary is less likely to cause reactions and infection.

[u/lola_rose00 → u/Competitive-Net1603]

Hey not OP, but can you tell me a bit more about the TENS? What frequency are you using?

[u/Competitive-Net1603 → u/lola_rose00]

Yes of course m. I’m not too sure in the frequency I’ve never bothered to check because my pelvic floor therapist set it up for me. I can adjust the amount/speed with a nozzle and i usually start with 4 and increase it to 6/7!Mines pretty basic but you can get wireless ones which I wish I had because it can get a little annoying with the cords. But I do find it helpful most of the time. And there’s different areas you place it depending on your pain location.