Chronic Pelvic Pain: The Missing Early Days Guide

Created: 7/27/2020 | Updated: 7/28/2020

I am a patient — not a doctor. None of this is medical advice, and I’m not liable for actions taken based upon information on this page. Only use this information under the supervision of a medical professional.

Bones and joints around the pelvis. Credit: Bao Yi Wong via Pixabay

Pelvic pain, defined by the Mayo Clinic as “pain in the area below your belly button and between your hips that lasts six months or longer,” can enter your life in a variety of different ways, and sadly, can often stay with you for a long time. For many, it develops after a lot of biking. It can also be the lingering legacy of acute trauma to the area, such as a rough birth or an accident.

It can also be virtually impossible to find a single triggering event. But there can be a sudden sharp jump in symptoms to an overwhelming level. And in reality no one should wait six months before aggressively treating pelvic pain.

For me, it began as a pinch in my genitals during prolonged stress and sitting when I was twenty, and it was just a nuisance for many years, assumed to have been caused by a minor nerve injury during weightlifting. Then it became disabling overnight — for no clear reason. It may have had to do with a hypermobility disorder.

“Pelvic pain” is a symptomatic diagnosis. One not necessarily related to a known underlying etiology and effective treatment. There are entire books about it.

Some closely related conditions or alternate terms are: prostatitis, chronic non-bacterial prostatitis, piriformis syndrome, levator ani syndrome, interstitial cystitis, endometriosis, vulvodynia, pelvic inflammatory disease, pudendal neuralgia, complex regional pain syndrome.

Long-term, if you know of a more fundamental issue, the best course of action is obviously to treat that problem as soon as possible. In practice, even identifying any such causes is often a process that spans months or years, not to mention finding effective treatment or a cure. If you have any amount of pain between your hips and your belly button, you need to aggressively invest time into understanding and treating it. It can wreck your life. It can, and probably will, get worse and spread across your body, and be accompanied, sooner or later, with issues going to the bathroom, having sex, sleeping, or even putting clothes on to do basic daily tasks.

A delay of months can cost you years down the road. You need to start today.

We should also mention that women and men have substantially different anatomy in the pelvic area, and therefore, can have different sources of the issue and trajectories of the syndrome. For example, the biking thing seems to happen to men a lot, whereas women are uniquely exposed to birth-related damage.

Since my experience is with the male side of things, this post may be missing some key points women and people of other genders could benefit from. It might implicitly assume a lot of stuff specific to the US. And it occasionally contains first-hand recommendations for treatment in the San Francisco Bay Area in California.

The Early Days

Be prepared for this to be a journey. There’s no way around it: Once you’ve had severe pain for a few months, it will generally take you months of dedication to see improvement — or longer if you’re less lucky.

Online, and in a few books, you can really dive into the details of long-term treatment. You might as well immediately snag a copy of Pelvic Pain Explained by Stephanie Prendergast, who founded one of the better known pelvic floor physical therapy clinics in the US.

But in the first few weeks to months, you may be left in the dark, literally, in severe pain that won’t let you sleep, groping for answers.

It is those early days of frantic processing that the rest of this post will help you get through. And you’ll emerge on a solid trajectory towards feeling better.

Here’s the top few subjects I wish I’d known about immediately upon realizing something was really wrong:

• Ruling out potentially urgent pathologies, such as testicular or ovarian cancer
• Quickest ways to get relief
• Getting first-line pain treatment
• Finding good medical providers to manage my case
• Grieving, pacing, and community

Ruling Out Emergencies

You should get all of this done as soon as possible: Take time off of work as necessary, find some way to get help with your kids, etc. Don’t hesitate. You have no idea how long this stuff can take in healthcare even if it ultimately leads to discovery of a life-threatening situation.

Depending on where exactly it hurts, you’re going to want to be seen by your primary care physician. In the UK and some other places “general practitioner” or “GP”. At this point, you’ll likely get sent to one or more of the following specialists: urologist, gynecologist, neurologist, gastroenterologist, or oncologist.

These folks will often have in mind some basic checks to run to make sure your life is not in danger. In my case, a urologist ordered an ultrasound of the testicles, and a gastroenterologist wanted either a colonoscopy or a CT scan of my colon and rectum. All was clear.

A crash course in the standard imaging technology available in 2020 can be clutch here, and its risk/safety profile, as you’re likely heading down a road of frequent looks at your body from different angles. You want to be informed and make the right decisions for your particular case.

You can get that quickly here.

Quickest Ways to Get Relief

I can’t overstate how key this is with pelvic pain. Medically, we’re not in the best place in 2020. It seems like a secondary concern to do some of the stuff in this section, but it is absolutely top of the list. This here helps in a few days, whereas the doctors and medications will take months. Seriously, call in sick right now and spend a day working on this:

The Hot Bath

The fastest path to some relief is a hot bath, ideally in a bathtub. 20 mins a night, right before bed. Various sources swear over using Epsom salts in the bath. I tried them for a while and found them to add a lot of cost, but zero value.

An alternative to hot baths are heating pads. At this time, I have no specific recommendations here, but other patients like them.

Clothes

Even years after my first pain, I get major relief whenever I’m able to wear more flexible clothing, and feel best with none on. This is not uncommon.

Initially, overwhelmed, I subconsciously overestimated how difficult it would be to get more comfortable clothes. I used to wear fairly tight pants. I had to give that up, but it was a no-brainer, and now I can shorten your search for the first helpful items. Here’s how to quickly adapt:

First: Comfort first and comfort now! Worry about looking good once you’ve calmed down the pain.

Order loose underwear: For men, something like this from the Gap: 4.5" Dot Print Boxers (Please ping me when/if the links in this section are broken)

Top layer below the waist: For women, you’re in a bit of luck here. Consider skirts and dresses whenever possible. Obviously, men would have to deal with all kinds of stigma with that.

Men probably want to get an elastic belt and loose pants. Start with a size up from your existing pairs. You want soft materials and a lot of room around your hips. And consider loose shorts instead of pants whenever possible.

Pants: Gap Modern Khakis in Slim Fit with GapFlex

Belt: Gap Stretch Webbed Belt

A lot of time the pant button is too tight for me to use, so I fall back onto my elastic belt entirely. The kind linked above specifically is easy to adjust frequently and lasts surprisingly long.

Shorts: Gap 7’’ Weekend Shorts

Do Cushion Your Assets

Sitting pain is my number one problem today, and I’m not alone in this.

Many books recommend “ring” or “donut” cushions or seats since often the worst pain is down the middle of your pelvic floor, and they also help with lower back pain — a different world. Some cheap versions are available at pharmacies and online.

None of those worked for me. The front and back sections of the cushion also hurt. What did help, and what I highly recommend, are these adjustable size cushions from Cushion Your Assets. Incidentally: the only company that is able to masterfully have fun with pain. I have a few of their Twin Cheeks cushions. They come in different levels of firmness. The firmest ones work best for me. Important: The sides are adjustable via velcro. I initially didn’t feel comfortable on mine and forgot about them for months until realizing they were just too narrow for me as they came. ️🤦🏼‍♂️

A Cushion Your Assets sitting cushion

Getting First-Line Pain Treatment

The next step, medications, will require a prescription and expertise.

It’s almost a crime that it took me more than a year before someone offered me a semblance of relief in the form of medications.

There’s many that may help you with pelvic pain, but I will just cover the top 2 that were a staple in my recovery from a large degree of disability to a more manageable place.

I will remind you that I am a patient — not a doctor. None of this is medical advice, and I’m not liable particularly for meds you take. Only take meds under the supervision of a medical professional.

Another important pause here: Pain is an incredibly valuable motivator, and you should not fool your body into thinking things are better before you and your team of medical providers have aggressively ruled out all potentially life threatening causes of your pain. Even after that, DO NOT let life drag you back into your previous routine just because you’ve decreased your pain. It’s not unlikely that you will need to dig deep to understand why you developed pelvic issues in the first place, and keep investing in maintenance for the rest of your life.

Amitriptyline

That being said, as soon as you have access to a primary care physician, urologist, or neurologist that is half-literate in pelvic pain, you should ask them about amitriptyline (brand name “Elavil”). Amitriptyline is usually referred to as a “tricyclic antidepressant”, based on its original intended purpose. In lower doses, it is one of a very few drugs with some scientifically proven effectiveness against certain kinds of chronic pain, such as chronic pelvic pain and fibromyalgia.

Read the following notes very closely!

1. Dosage protocol: For some the typical dose of 10mg helps, but many (most?) will have to ramp up in increments of 10mg to get to an effective one. For me, that has been 30mg. Ask your doctor for help with ramping up — it can take more than a few days to do so safely. 50mg is, I believe, the usual lowest dose for depression.

• The first time someone gave me a prescription, they neglected to tell me 10mg usually does nothing. Thanks for that. Another 6 months of needless suffering…

2. Safety: Paradoxically, when first getting on it, or while increasing or decreasing the dose, it might well make you feel depressed. It absolutely does that for me — lasts about a day. It even lists per FDA rules, as a serious side effect, “an increased risk of suicide in those less than 25 years of age”.

As such, especially if you do suffer from depression as well, which is common with chronic pain, you may actually want to coordinate extremely closely with your doctors, or look for something else instead. Definitely something to bring up with your doctor.

Lorazepam and Diazepam

Edit: As of March 2023, I’ve learned that lorazepam (Ativan) is more popular among physicians and patients I’m in touch with. It’s also a benzodiazepine, but has a shorter half-life, may have a weaker pain relieving effect, and probably other differences like more benign side effects. I know it’s an intermediate step from diazepam to no medication in the protocols of psychiatric clinics for discontinuing diazepam. By the way, psychiatry is more commonly where benzodiazepines are used. For pain they are controversial because of some of the issues listed further below.

Diazepam (brand name “Valium”), a benzodiazepine, is an even more powerful drug. Its main use is against anxiety, which, mind you, is not the same thing as depression. Many doctors are hesitant to prescribe it due to addiction concerns — currently in the US related to the opioid crisis. So you may end up having to look for one that’s well-versed in it.

It happens to be a good choice in many pelvic pain cases as a temporary crutch. The primary principle of action is inhibiting the central nervous system. In pelvic pain, that means the following:

• Great sleep
• More relaxed muscles. That can sometimes lead to lasting relief, as spasming muscles can compress nerves, which will cause a reflexive muscle spasm in turn, completing a vicious cycle that can be a common root source of pelvic pain.
• Ability to focus on something other than your pain.
• More mellow mood. This helps prevent you from clenching your pelvic floor muscles.

The major concerns with diazepam I’m aware of are:

• Insomnia and withdrawal. You may develop this, soon after going on this, or especially if you take higher doses or vary them rapidly, or even just by taking low doses for a long time. I developed a severe insomnia problem after a few years on and off, the longest time consistently on 5mg nightly. The trigger in my case was accidentally varying my doses by a lot: One possible reason was getting a new batch made somewhere other than my usual pharmacy, as compounding pharmacy quality can allegedly vary wildly. Another was switching to petroleum jelly instead of “water-based” lube to place my suppositories. That can wrap them up and prevent absorption of any and all of your medicine.
• Lower blood pressure. Your heart is another muscle being induced to work a little less hard. If that’s already a problem for you, you may not want to use diazepam.
• Addiction potential. Depending on your past addiction history, family addiction history, and other factors, this may be an issue that causes you to opt out.
• Long-term it could induce allodynia — hypersensitivity to touch. This is allegedly reversible upon stopping, but very scary to someone already in crippling pain.
• To many, any mood alteration is an undesired side effect.

To keep the delivered dose predictable and avoid slipping into higher doses with higher side effects, my doctor prescribed diazepam to me as a suppository. If you take a pill, the absorption can vary depending on your stomach’s contents, and varying doses of diazepam from day to day are a recipe for bad mood and other side effects. A suppository goes in the other end, where your intestines are just as absorbent, but where there is no stomach acid and food, so the delivered dose is very consistent.

A huge unexpected benefit that’s led to my restarting diazepam after a pause of about a year: It is a mast cell stabilizer. In my condition, which is larger than pelvic pain, after years of experimenting, me and my doctors have come to believe that mast cell activation is part of the process of permanent progression. That is, when I take 5mg of diazepam twice a day on an ongoing basis, I don’t get worse. When I don’t, I appear to have a permanent spreading and worsening of my pain every few months. This aspect of my personal case is up for debate as of July 2020 because of reasons beyond the scope of this article, but every month that passes by seems to make the theory more credible. Or at least the part of it where diazepam is preventing the progressions.

Building Your Medical Team

Primary Care

You may suddenly find out, like me, that you’re not happy with your primary care physician, or sometimes may not even know if you have one. Your PCP (or equivalent) will be a key person who, ideally, will be proactive and resourceful, and at minimum needs to be understanding and ready to work with a difficult case, as yours may turn out to be. You’ll need to see them often initially. You’ll need advice on medical procedures, blood lab orders, referrals to specialists, and medication prescriptions.

If you’re like most young adults when they first encounter severe pelvic pain — 20’s and 30’s are the typical age range — you probably have no relationship with your PCP to speak of. And relationships with good physicians usually take time to build. But it’s never too late to start. How to do that is a whole separate subject to cover another time, but many decent guides exist online. Here’s one. The top subject that is poorly covered in 2020 is that location matters less. You have more flexibility within your metropolitan area, or if you’re in a rural area, more options that are now familiar with telemedicine. As long as you can go once or twice per year, they should be willing to take you on.

Specialists

For pelvic pain, unless you have success within a month, I also highly recommend, in the US, a urologist, gynecologist, or neurologist who specializes in that area.

I think of doctors here in terms of three categories:

1. In-demand specialist (urologist, gynecologist, etc.): In your covered health insurance network or at the major local hospitals.
2. Available specialist: At a small private clinic, have lower patient traffic and lower wait times.
3. Pelvic pain expert.

Anyone from categories 1 or 2 can help you rule out the life-threatening emergencies your pain may be indicating.

Beyond that step, I strongly suggest you find a pelvic pain expert.

The pelvic pain expert category usually overlaps with the available specialist category in the US. That’s because integrated roles like that don’t exist in the medical system, and so they tend to work at a premium at small private practices.

Here’s where to find each kind of specialist:

1. In-demand: Your primary doctor will likely send you there. If not, Google or ask around about the major hospitals in your area, and ask your primary doctor for a referral there.
2. Available specialist: Try a tool like ZocDoc, Yelp, Google, etc.
3. Pelvic pain experts: Really hard to find. Here’s one list of those throughout the world, including the US.

• In the SF Bay Area, for decades a common go-to person was Dr. Jerome Weiss, who recently retired. Today, in California, I highly recommend:
• Dr. Jeannette Potts at Vista Urology Pelvic Pain Partners in San Jose. Dr. Potts is a great first-line pelvic pain expert, and can ideally be a sufficient partner for you.
• Dr. Lawrence Poree at the UCSF Pain Management Center. Dr. Poree has great advice and performs nerve blocks, botox injections, and more. That’s stuff you’ll be considering if pelvic floor physical therapy doesn’t help you.
• Dr. Sheldon Jordan at Neurological Associate of West LA in Santa Monica. Dr. Jordan does what is typically done at a pain management clinic as described above, but at a private practice. He will be pricey, but will offer faster access (compared to a UCSF), and a wider range of treatments, such as exosome injections, similar to stem cells.

By the way, here’s a general trick you can apply to specialists in general, not just for pelvic pain:

The in-demand specialists usually have long wait times for new patients. But they tend to be the best in their specialty in your area.

If the e.g. urologist at your closest good hospital has a waitlist of months, book that appointment, but also book one with a urologist with a more open schedule. If this latter person turns out to be helpful enough, you can always stick with them and cancel your other appointment (with at least a week’s notice). The big shot hospital won’t care either way, though they’d prefer you cancel as soon as you know.

Pelvic Floor Physical Therapy

You may be able to get a good amount of help and direction from a pelvic floor physical therapy clinic. I had little to no direct benefit with my pain after 4–5 months of 2–4 visits a month. In fact, I got slightly worse: something I don’t blame on my practitioners at all, but rather on my root causes. I was going to make that progression soon without visiting with them anyway.

I did, effectively, get some lightweight mental health therapy, encouragement, and practical pointers. Unfortunately, they don’t prescribe medications or write referrals to other specialists.

Here’s a list of physical therapists around the world.

In the SF Bay Area, I recommend:

• Healthwell Physical Therapy, also broader orthopedic PT: Mindy Marantz
• The Pelvic Health and Rehabilitation Center in San Francisco and Berkeley. They have other locations in major US cities.
• Beacon Physical Therapy, also broader orthopedic PT, San Francisco: Allison Massopust or Lauren VanCitters.

Grieving, Pacing, and Community

If you manage to rid yourself of your pelvic pain in weeks to months, that’s amazing. Give yourself a pat on the back and share your experience publicly. Don’t be shy. Precisely because this part of our bodies is taboo to discuss, you have no idea how many people out there are living with pain and no guidance.

If not, a few frantic months later, you’ll be mentally exhausted.

Do this by yourself or with your closest person: Find a quiet place, a room, a park, wherever you feel safe, and sit down with your emotions. Or walk, lie down, whichever is comfortable. You may find that you’re scared of what’s going on or what lies ahead. Acknowledge that feeling. Give it space. Cry if it feels right. Acknowledge also that this was beyond your control. There’s no way in hell you would’ve allowed this to happen to your body if you had any idea or any control.

I remember being on the air train to the airport in San Francisco, about 5 months after the onset of my severe pain, sending my mom off back home to Bulgaria after her unrelated visit. I started crying in public, very unusual for me. I was scared because the problem had completely taken over my life.

Also, although I’ve often felt advice like this to feel condescending or unfair, it is the right one: Try to find something relaxing that you’re still able to enjoy on a regular basis. You may have to search for a while. That’s OK.

I discovered that I loved walking to work and back and listening to The History of Japan podcast or calling a friend or relative. And then later, as I found more and more relief, I was able to go back to most of my old life. Seeing a therapist is great if you can afford it, and if you’ve never felt like seeing one was a good idea at all — now it absolutely is.

A common modern management mantra is: This is a marathon not a sprint. And so with chronic conditions. Defeating one requires persistence, so don’t burn yourself out quickly.

You’ll also want to start looking for similar patient communities. This is a complicated subject, one which I myself am still trying to understand better, but one way to get started is by joining Facebook groups like Pelvic Floor Dysfunction for Rectal Pain and Discomfort and Chronic Pelvic Pain Syndrome Relief, and subreddits like r/PelvicFloor/.

Bonus Fire Round: Other Useful Stuff

• Meditation is an indispensable tool. At the very least, it’ll help you sleep better. The Headspace apps are a great start.
• Get Netter’s Anatomy, on your laptop’s Kindle app. Learn how your body works, in particular the muscles and nerves, prepare for health appointments, and practice visualizing and relaxing the painful muscles. You’ll blow your doctor’s mind by looking up an illustration by word search in the Kindle app at their office like I did.
• Quick pelvic floor anatomy online.
• Video version of the same.
• Driving: You’ll hate driving. Walk, use public transit, get rides if possible. If you must drive, and in 2020, you must, the most useful features to have in a car are: 1. comfort — smooth suspension, soft seats and padded interior elements, less responsive pedals and wheel. 2. automatic cruise control — cruise control that can automatically slow down and stop behind other cars. The luxury tier of brands generally are best, even if older. An older Lexus may serve you better than a newer Corolla that costs the same.
• Dynamic Contraction Technique for Pelvic Pain: A newer approach to pelvic floor physical therapy that I don’t yet endorse, but have been referred to by fellow patients, evaluated as promising, and am about to explore (July 2020)
• The term “pelvic floor physical therapy” is deliberately used to get around American body and sexual stigma. The most potent tool in that discipline seems to be gentle internal stretching of the pelvic floor muscles and release of trigger points. Internal meaning through the anus or vagina. Those are by far the best ways to access the tight muscles. Don’t be intimidated. This is standard practice and appears to help some patients a lot, sadly not me. A trained physical therapist is by far the best person to do that for you — as weird as it sounds initially. They would use fingers. But if you’re having trouble finding one near you, since it’s impossible for you to use your own fingers due to the angles of things, this is a typical “pelvic wand”. With that, you can attempt some massaging yourself. You’ll also need lubricant similar to this one. Just be extremely gentle. Like start with 10 seconds of very light pressure every other day. Try and read up on the method before you do too much at home and hurt yourself.
• I don’t personally recommend what seems to have been previous generations’ favorite book, A Headache In the Pelvis. I found it too focused on psychological help. Meditation specifically can help, of course, but honestly, only so much. I believe each patient needs to aggressively pursue the physiological basis for their pain, and the best among a long list of treatments, which tend to work differently on different people. In 2003, when the book was written, the options were more limited and less widely available.
• Here’s various treatments beyond the initial stages mentioned in this post: Acupuncture, myofascial massage, nerve blocks, Botox injections, neurofeedback, frequency specific microcurrent. You can find out more about some of them in Pelvic Pain Explained.

A deep thank you to all my doctors, friends, and family who helped and supported me through the tough acquisition of the info compiled in this post.

Drop me a comment if you found it useful, or tweet at me nikolayv.

Update history:

• 7/28/2020: Rearranged and cleaned up “Feeling Comfortable” section, turned it into the “Quickest Way to Get Relief” section. Changed “Grieving and Pacing” into “Grieving, Pacing, and Community”. Fixed typos.