PGAD, Vulvodynia, IC - Advice Needed

[kehernandez]

Hi everyone,

I will try to make this relatively short. I am looking for some advice/reassurance. 8 months ago I went to stay with my mother for the weekend and (without my knowledge) some facial toner spilled on a panty liner in my toiletry bag. I wore this panty liner all day, exposing my vulva to the harsh acids in the facial toner.

Since then, I have been experiencing a variety of symptoms. I already had IC, which was flared because of the toner.

My current symptoms are:
-vulvar burning (this has reduced significantly)
-Urethral burning (has lessened dramatically with the help of amit.)
-Mild clitoral nerve pain (shooting pains up my clitoris and labia minora)
-Extreme clitoral sensitivity/arousal

The symptom that is bothering me the most right now is the clitoral sensitivity and arousal. It will not seem to go away. Even after 8 months. What I am doing right now to manage this includes:

-Physical therapy at Sarton PT
-Lidocaine cream (only helps for a few hours, causes burning in my vestibule)
-15 mg Amit. (helps with the burning, not so much the arousal and sensitivity)

My PT says if the arousal does not get better soon, I should consider seeing Dr. Goldstein in San Diego to get a nerve block. This scares me tremendously because I am afraid it will make the symptoms worse. Part of me is hoping the symptoms will calm down more with the passing of time, but sometimes I get discouraged.

My doctor also recommended that I try Cymbalta, but I have also read horror stories about this causing PGAD or making it worse. (Can you tell I have intense health anxiety and a fear of medications?)

I have been avoiding intimacy for months now, because I am afraid an orgasm will make it much worse. My doctor tries to reassure me that the nerves are irritated and will eventually calm down, but sometimes I start to lose hope.

Please let me know your advice. Should I try the nerve block? Should I try the Cymbalta? Should I give it more time and see if my body will heal on its own?

I know many of you are struggling with more symptoms than this, and my heart goes out to you. Dealing with this has been emotionally exhausting, and gives me a great deal of anxiety and sometimes depression.

Thank you for taking the time to reply. It means a lot to me.

Kristine

[Violet M]

Hi Kristine,

Since you already had IC before the toner incident, it sounds like there is way more going on than just an injury from the toner. What tests did you have to determine you have IC? The reason I ask is that some of the symptoms of IC and pudendal neuralgia can be similar. Do you have any idea what might have triggered the IC?

I can't say for sure if cymbalta will help. It was not as effective for me as lexapro was and it had more side effects. Lexapro took a significant part of my PGAD and urinary symptoms away, but it's a strong drug as are all SSRI's/SNRI's and you have to go off of it carefully when you quit taking it. When I didn't need lexapro anymore, I took a year to wean off of it slowly.

A nerve block might help temporarily or it could flare you up, so my thoughts on nerve blocks is to only try them if you have exhausted some more conservative treatments and your quality of life is pretty bad. Since you have already tried PT, it sounds like you might already be at that point. For me, PGAD was worse than pain and it was worth taking the risk of a nerve block. But too many nerve blocks can damage the nerve, especially if they have a steroid in them. So I don't think endless nerve blocks is a good answer. Some doctors recommend that you don't try more than 3. But 1-3 blocks might be worth it for diagnostic purposes. Sarton PT should also be able to help you narrow down a diagnosis by palpating the pelvic floor to determine what triggers your pain or symptoms.

I'm not sure what to say about whether to wait longer and see if you will heal. It would depend on what is the root cause of your symptoms and I don't know enough about your full history, clinical exam findings, and symptoms, to give you an educated guess on whether waiting will help. It seems like you should be seeing some improvement after 8 months if it is all due to the toner injury, but I could be wrong.

Violet

[kehernandez]

Thank you for responding, Violet. I really appreciate you taking the time to offer advice. It seems as though my symptoms are constantly evolving. Luckily, a great deal of my PGAD symptoms have eased. Currently, I am experiencing the following:

-mild burning on vulva and vestibule (steroid cream helps)
-mild burning during urination (Amit helps)
-Clitoral sensitivity
-mild Clitoral pain (usually worse during period)
-NEW SYMPTOM: pain to the left of anus along bum crack that gets worse when sitting

My doctor and physical therapist believe the incident with the toner really irritated my pudendal nerve and it is taking a long time to calm down. The new pain near my anus worries me. I have been avoiding any activities that aggravate it, such as sitting. Thank you so much for your advice about the nerve block. I will avoid this unless it is absolutely necessary.

Question, if the nerve is not entrapped and just irritated, do most people eventually find relief? My doctor and PT do not believe there are any major issues with muscles/ligaments, just nerve inflammation and pain. I am trying to take the least aggressive measures possible, but I am worried this is going to get progressively worse with time.

Thanks again Violet!

Kristine

[Violet M]

Hi Kristine,

Not to second guess your PT and doctor but I'm trying to figure out how the toner got deep enough to affect the pudendal nerve. I guess I can see how it might have affected the terminal branches/nerve endings -- in other words the small nerve fibers near the surface of the skin, but otherwise the pudendal nerve is pretty deep.

I would still be interested to know how you were diagnosed with IC prior to the toner incident. Was it based on symptoms alone or did you have any diagnostics to confirm it? If it was just based on symptoms, then you need to consider whether it was diagnosed accurately or whether you were already experiencing pudendal neuralgia which can have similar symptoms as IC, and the toner just triggered worsening symptoms.

If just the small nerve endings are affected, then I think you just have to wait until they heal. You could try some alternating hot/cold sitz baths (2 minutes in hot, then 30 seconds in ice cold water) alternating back and forth 4 times. Do this 4 times a day to bring fresh blood to the area to promote healing. You could also try hyperbaric oxygen treatments but these can be expensive and won't necessarily help if there is some underlying cause that is continuing to irritate the nerve. I was able to get insurance to pay for 50% of my treatments.

If there is a deeper underlying problem and you don't seem to be healing, then you have to consider that there is a reason the nerve remains irritated. Have you had a 3T MRI or an MRN yet?

Violet

[kehernandez]

Thank you so much Violet,

I was diagnosed with IC in 2017. My doctor performed a cystoscopy and did not see much irritation in my bladder, but my urethra appeared to be red and inflamed. She thinks most of my issues with burning originate in my urethra. I had frequent UTIs growing up, and she thinks this is what caused the tissue and nerve irritation in that area. She believes the toner caused my urethra to flare again. She also thinks the toner caused the vulvar burning and PGAD symptoms, but I am worried that there is something else going on as it has been 10 months of issues. Many of my symptoms have eased, but some still linger and sometimes new ones appear (like this new bum pain).

I have not gotten either of those tests yet. What issues could they potentially reveal? Would they show if there was some sort of entrapment or inflammation of the nerve? I know that if there was an entrapment, that would potentially have to be surgically removed, but if it is just nerve inflammation, how would that be treated?

I worry that doctors are going to push nerve blocks on me and potentially make this issue worse.

Please respond at your earliest convenience.

Thanks again!
Kristine

Also, I live in Orange County Ca. Do you think I should see a neurologist to get a second opinion? I have just been visiting my urogynocologist.

[kehernandez]

Hello everyone,

I just wanted to give you an update on my condition. I saw Dr. Michael Hibner on Tuesday. He went through my medical history and evaluated my symptoms. He also did an ultrasound of my clitoris to see if there were any issues with my veins in that area. He does not believe I need any other imaging done. He believes my history of frequent UTIs, infections, plus the acids from the panty liner incident were the perfect storm to inflame my pudendal nerve and make it very angry. He does not believe I need imaging of my spine or an MRI of the nerves. He does not believe I have any issues with my spine or any sort of entrapment going on.

He recommends that I add Lyrica to the amitriptyline I am taking. He wants me to continue with PT at Sarton. He also prescribed suppositories that I will be using vaginally and rectally that include Valium, Baclofen, and Ketamine. He believes my muscles are tight and spasming which is compressing the nerve and sending the jolts of nerve pain. Unfortunately, sometimes nerves take a very long time to calm down.

If I do not improve soon with the strategies mentioned above, I may get Botox injected to help with the tightness and spasming of the muscles. He also said nerve blocks with numbing agents and steroids are an option, but I am very hesitant about that. I am going to continue avoiding activities that irritate my nerve, such as sitting and any sort of vigorous exercise. I am also going to continue with the estrogen cream to help with burning in my vestibule and Lidocaine ointment to help with any clitoral sensitivity.

I will check back in in a couple months to provide another update. My heart goes out to anyone struggling with these conditions. I know how hard it can be.

Lots of love!

[kehernandez]

I also wanted to add that my experience with Dr. Hibner was wonderful. He was extremely knowledgeable, compassionate, and kind. He spent over an hour with me answering my questions (I had three typed pages worth). He offered me tissues when the tears started flowing and overall had a wonderful bedside manner. He gave me hope. I was lucky enough to be able to see him in California, as he is partnering with my physical therapist’s office and seeing patients a few times a week in Tustin, California. I highly recommend him if you have the means to see him or are in his area.