My Chronic Pelvic Pain

Where It All Began.

There is really no easy way to talk about chronic pelvic pain, RGS-Restless Genital Disorder (PGAD), and all that comes with it. I have been diagnosed for over ten years and I still find it pretty awkward even when talking to doctors. In these ten years that I have known about my diagnosis I have been able to travel to over 20 countries, date and marry my husband, and start my own company. I started being more vocal about my diagnosis during my recovery after my vestibulectomy surgery. I realized (like so many times) when trying to google about other people with RGS/PGAD I was only finding really sad and depressing links. Hardly any of it was useful. I want to change that.

Just to start this all off, I'll briefly explain my diagnosis history. In 2012, during my senior year of college, I entered a state of depression and anxiety after some traumatic events that occurred at school. Not only was I filled with extreme anxiety, but I began to feel my body break down as well. I came home for winter break and told my mom I was not feeling right. I explained that I constantly had a feeling of needing to pee even though I didn't need to (state of urgency) and I started to have nightmares and anxiety attacks in public places thinking I was going to pee myself. After going to a bladder doctor, my gynecologist, and a couple more, it became clear we had no idea what I had. These doctors had no answers for me or my mom except that all examinations and test were painful for me to receive (tests that normally cause no pain). 

One night I began googling. I was trying to put my pain into words. So I began searching things like, "My legs feel like there are creepy crawlers going up and down" and "masturbation to relieve pain", etc.. This is how I found out that I have PGAD and IC (and all that comes with it). So, I went into my moms room, handed her the computer and said, "this is what I have." My mom is no ordinary mom. She is both a Pediatrician and a single mom (after my dad passed away when I was nine). She is always beyond supportive and understanding. I am very lucky and trust me I know it. Not everyone has the ability to talk to parents about these things. My mom took the computer, read the article, gave me a hug and said, "we are going to figure this out." 

My mom spent the night googling and researching. It was not pleasant. There were several articles depicting the amount of pain these girls were in and even leading some to suicide. There was a light at the end of the tunnel, though, and his name is Dr. Echenberg. My mom called the office the very next day and made an appointment to see him two months later. 

My journey with Dr. E has been nothing but hopeful, welcoming, and obviously helpful. I began going to physical therapy for pelvic pain, reading recommended books, practicing new breathe exercises, and taking new medication. One year later, I was a brand new person. My anxiety and depression was a thing in the past. Dr. E is a constant encouragement in my life. If ever I need to speak to him or ask him anything he is there ready for a skype call. When I have flare-ups he is always ready with a solution, something that could help me back on the right path. 

It has been ten years since I was diagnosed with Pelvic Pain, IC, and PGAD. I am 33 years old and married to the best husband in the world. I have my ups and downs, but luckily, I am able to see when a flare up is coming and what is causing it. It is still a learning process. And there are times where an old trick doesn't work and I need to find a new one, but it doesn't keep me down. 

Tackling Things Head On.

Even thinking that maybe you have these symptoms is scary. Telling even one person you are feeling this way is humiliating. Or at least it feels that way. For me, the day I figured all this out, was a bit of relief. For me, just being able to put a name to it all helped me tremendously.

After that, my focus went into solutions. It was not so easy in my Senior year of college, during my senior thesis. I even asked my department head for a leave of absence that got denied.

I started Physical Therapy in New York, where I was living. I was taking Elmiron, Gabapentin, and 3 different creams to work on my symptoms. I got dilators (but had no idea how to use them). I read books and online articles. I saw a Psychiatrist and he prescribed me an anti-depressant and anti-anxiety medication.

What a year it was. I remember a couple of times I was on the subway heading to work and I would all of a sudden black out, have a panic attack thinking I was peeing myself all because of my restless leg syndrome, that was not yet under control. I had to get off the train at any random stop, take a Xanax. One of those time, I got out of the subway and walked the remainder 35 blocks to work.

I remember telling people I had IC or just explaining the bladder related symptoms to people. I remember feeling embarrassed. But things started working.

The tools exist. Their are doctors that are out there trying to learn and teach more about all this. I just want to encourage you to be brave. Believe you can get through this. I am going to devote some posts solely on some treatments I have tried, what has worked and what has not, and what you can do it you have limited resources.

Using The Right Tools.

First things first:

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/

**Updated - apparently if you use this for over 10 years it can cause some eye issues.

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.

So what to do when a flare up hits?

First off, talk to your doctor. Everyone is different when it comes to Chronic Pelvic Pain. If you have found your specialist, give them a call or email and see if they have a plan. There were times where I did my normal flare up solutions but nothing worked, so I called my doctor. Sometimes flare ups are worse than we think. I have gotten pudendal nerve Blocks as a result of flare ups, for example. This was after a bad period of time of extended symptoms.

If stress is the cause of your flare up, get to the root. Things that help me are breath-work, yoga, or boxing. If you have not found what works for you to reduce stress, keep trying. Something different for everyone. Sometimes it's punching a boxing bag senseless and sometimes it's meditating in yoga class. It could be writing it out in a journal, talking to a therapist, or painting. Also, I realize when I am stressed I tighten my abdomen (I suck everything). Wearing a band or bracelet reminds me throughout the day to release my stomach. I find this helps A LOT!  

There are a hundred different treatments to flare ups. What medications are you currently on? Can you increase any of these doses (such as Gabapentin)? There are pudendal nerve blocks and bladder installations for bigger cases. There are diazepam suppositories for better sleep and relaxation. For long, extended periods of flare ups look into pudendal botox.

What about non-doctor related treatments? Something that doesn't require a prescription or medical solutions? Figure out what works best: Soak, Heat, or Ice it!

Soak in a low bath (or Sitz bath) filled with epsom salt. The water should be warm. 

If that doesn't feel good >>

Heat your pelvis with a heating pad. Place on your lower back, glutes, or under the stomach.

If that doesn't feel good >>

Ice the area directly. You can use a flexible ice pack that looks like a pad that goes in your underwear made from a cold pack. You can also freeze a water bottle and place it in between your legs.

After my Vestibulectomy, I was in so much pain and discomfort. I realized that I had been waiting to get this surgery for so long I didn't do any research. I trust my doctor whole-heartedly, so I really didn't think to do anything else. The surgery went great. It is the AFTER that was brutal.

SO MUCH DISCOMFORT. And here is the thing. After the surgery I was like "AHHHHH is this normal??" SO I googled and googled. I got articles and case study after case study. I just wanted to find something written by an actual person who had the surgery. I wanted to read what could help this discomfort and was it normal. It was so disappointing.

So, end of story? Eight months later, I have ZERO regrets about the surgery. I totally feel the difference (after three months of physical therapy). My surgeon said I could try sex after six weeks of physical therapy, but my physical therapist (Dr. Pam Downey), laughed at that. She was like, "Do not put a date on it. It will heal when it heals". And she was right. It took three months. I was able to have pain free sex. Before the surgery, for about a year and a half, penetration was painful. The beginning would hurt mostly. Sometimes towards the end as well. There were times I would clench my teeth and hold my breathe through the pain, but I didn't want to stop. I didn't want my condition to stop me from having a "normal life" or "a normal sex life". I would keep it from my husband not wanting to burden him. Finally, when I heard about the surgery, I spoke up.

I also don't want people to read this and get scared to have the surgery, because again it was 100% worth it. So, what can be done to help the discomfort and pain after the surgery?

Cold Packs That Are Slim And Fit In Underwear: Wow. I wish I bought this sooner so that I had it right after the surgery. I bought it two weeks after, but wished I had it immediately after. I used regular ice packs, because ice was a savior. It helped so much!!

Period Underwear With A Pocket: This is good if you want to put the ice pack inside.

Ibuprofen: This is a standard, but for me this was way more crucial then the pain pills. Pain pills didn't work for me. I needed something to reduce swelling more than anything.

Handheld Bidet: After the surgery, you can take showers but you need to be careful. No hot water and no downpour over the area. At first, I would just use a wet towel and dab. A very light stream from the bidet and a towel could help clean the area.

Dessert Harvest Cream: Another product I did not have in time. This is a mixture of a Lidocaine and Aloe Vera cream. It helps cool and numb.

Waffle Seat Cushion: This is not the exact one I have, but a seat cushion is necessary. Sitting in a chair, sitting in a car, going on a plane. All these things need a cushion. you will be in so much discomfort after you will mostly want to lie down for the first week, but even for the next two weeks, you will need this when you want to start going places.

Pads: You will bleed a little bit, so just bring some maxi pads for the first two days.

Loose fitting clothing: I really did not do any research! I brought only two loose fitting pants. What a mistake. I brought leggings, Like legit thinking I was going to go for a run What a joke. Bring pants to lounge in. Loose fitting underwear as well. Almost like Briefs.

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.