I have been getting a lot of messages regarding possible treatments. I decided to write out a list here of things I have personally tried and things I have heard of. Please remember I am not a medical professional. This is list is purely based on my personal experiences.
Find a Doctor:
Easier said than done, I totally understand. If you are in a foreign country or even in a more rural area in America, I understand it is difficult to find a specialist. These conditions are still not well known so it is important to find a doctor that knows what they are talking about.
Dr. Echenberg, one of my specialists, takes new patients virtually! Just fill out this survey, and send it back to him to make a virtual appointment. Talking to a doctor like Dr. Echenberg is important because he can help direct you to your next steps and treatment plans to get better.
Major cities, like New York City, have specialists as well. Sometimes they can even help find someone closer to you. Check out The Centers For Vulvovaginal Disorders for further doctors as well as resources.
Diet:
Annoying, yes. Helpful? 100%. Following a good IC diet helps reduce symptoms for both IC and PGAD. I remember when I was first diagnosed I kept tp this diet like it was my job. It definitely worked. To some up: No coffee, no cranberry juice, no acidic foods like tomatoes and oranges. See here for a useful list of good and bad foods: https://www.ichelp.org/living-with-ic/interstitial-cystitis-and-diet/elimination-diet/least-and-most-bothersome-foods/
Medication:
Gabapentin - This helps with nerve pain so this definitely helps with PGAD and Restless Leg Syndrome symptoms. The max dose is high at 3600 mg. I am currently on 400mg three times a day (1200 mg). A doctor can determine the correct dose for you. Some people I have spoken to have complained of a few side effects including memory loss, dizziness, and further depression. I personally have not experienced these and the benefit Gabapentin has given me is huge. I no longer have restless leg syndrome (feeling of creepy crawlies going up and down my leg). Alternate medication: Lyrica and Pregablin
Elmiron- This is more to help Interstitial Cystitis. It helps to form a layer in your bladder lining. This helps with feelings of frequency and general bladder pain (feeling like needing to pee all the time). This medication can be expensive without insurance. If yo uneed help you can get a compound version of this medication. https://www.pavilioncompounding.com/elmiron-pentosan-polysulfate-100mg/
Anti-Anxiety and Anti-Depression- I will not put specifics here because there are so many meds out there for this. You need to speak to a doctor to see the right one fore you. For me, these meds were VERY important when I was first diagnosed. I always tell people, I am not ashamed that at that time I needed a helping hand to get me out of the constant sadness I was in. I am no longer on these meds (only take Xanax as needed-very rarely). But I could not have gotten to where I am today without having been on these meds for 18 months. In general, some people have PGAD symptoms at their worst when they are stressed out. This is because they are holding all stress and tightening the abdomen and pelvic floor causing a flare up. Taking these meds can help the reduction of stress and therefore causes a reduction of symptoms.
Prelief: This is available at any local pharmacy. You do not need a prescription. You can also buy it at Amazon. It is a food acid reducer. So if you know you are going to eat some pizza one night or drink some coffee then take one before.
Azo: Some doctors think this is just a placebo effect, but I swear by it. I take an Azo right before a night out where I know I will be drinking. It turns your pee orange, but you may just have a night of not needing to pee every 15 minutes. This really helped me when I was trying to be a normal 21 year old and didn't want to have major flare ups on nights out. It is usually used for UTI symptoms which can explain the help.
Creams:
TCA 0.5% - used in the inner lips/Labia Minora to reduce redness
Mupirocin 2% + Desoximetasone 0.25% - Used together in the bottom of the vaginal opening.
Lidocaine - Using this too soon could be a bad thing. I remember reading about Lidocaine when I self-diagnosed myself and it burned SO BAD. Found out later from my doctor that Lidocaine should be used only once redness has gone down in the area.
Dessert Harvest Releveum - A mixture of lidocaine and aloe for a more soothing feeling. You can put in vaginal opening or directly on clitoris.
Therapy:
Physical Therapy - I wrote a post dedicated to PT because I swear by it. Finding the right person is also key for this. I am finding that more and more pelvic pain physical therapists are emerging. I have been to many (in New York and in Miami). My current PT is a lifesaver. I always thought that my conditions were things I would just need to live with and figure out how to manage my pain. Dr. Downey, my PT, teaches me how to live pain-free.
Dilators - You can learn how to properly use them in PT. They come in several shapes and sizes. The idea is to start small and make your way up (dedicated post to come).
Counseling/Therapy- I am a major advocate of mental health and therapy. Stress is a major component of these conditions. A main reason I started this blog was because I was tired of reading only negative, hopeless things about PGAD and Pelvic pain. These conditions are not obvious to the naked eye. We struggle just to talk about out symptoms due to their location. Therapy is LITERALLY a life saver. Like a doctor or a physical therapist, finding the right one is key. There are therapists/psychologists that specialize in dealing with chronic pain, which is great, but again you need to figure out what is right for you. Take a look on https://www.psychologytoday.com/. There are specialists in anxiety/depression, women issues, sex therapy, trauma, coping skills, etc.. It took me a couple of years and about 4 therapists until I found my right one.
Acupuncture - I saw a pelvic pain acupuncture specialist. Yes, the needles went down there. They also went on my back, toes, and face. I personally am not a fan. I was too nervous and I felt like taking them out stressed me out more. I have friends who love acupuncture. Give it a try if you can.
Procedures:
Bladder Instillations - I personally did not feel this worked for me, however I have spoken to several woman that said it worked wonders for their Interstitial Cystitis symptoms. Again a specialist should advise you on this. Or if you do choose to speak to Dr. Echenberg, he can send you a video on how to do this on your own.
Pudendal Nerve Block - I have done this one, but know several women who get this done all the time. This is something that needs to be done by the right person or it will not work.
Botox Injections- I don't know how I feel about this one. Again, another thing that women swear by, but my personally, did not have a good experience. The injection was a horrible burning sensation. Some women get a pudendal nerve block right before to numb that, but I didn't want to (regretted that). After the injection, I noticed a weird throbbing-like feeling around my anus when I worked out. My doctor said that I probably always had discomfort there but my vaginal symptoms were so strong it shadowed the others and now that the vaginal ones were suppressed it made the others come out.
Vestibulectomy - Comes later in the game. This is when the creams are not working to keep the redness down and you have worked on symptoms. This is to help penetration be comfortable again, dare I say even enjoyable.
Ladies, I have tried all the above. Not everything worked, while others work wonders. Different strokes for different folks. I don't regret anything I tried (even the painful ones), because in the end it brought me a step closer to finding out what does work for me. A lot of this is trial and error. I know you want to google the one simple fix, the one magical solution. IT DOES NOT EXIST. There are only many small things. Some times PT will work for you while some times it could make a flare up worse.
Remember that even 10% better still means you are better than yesterday. I speak to a lot of women asking me how did you cure it all. And I tell them, I didn't. I may never. I just find what works to heal me now, heal me today. What can I do to fix today's flare up? Or make it even a little better. Please have faith. There are solutions out there. There were times I was on 3 medications, 4 different creams, PT, acupuncture, and dilators all at once. Then there were times all I needed was an ice pack. You CAN have pain-free days. It takes work and trying, but you can do it. Don't give up.
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