3 years post op! in Pudendal Decompression Surgery

Hello everyone, it’s me! I am 3 years post op from pudendal nerve decompression surgery. I’ve come a long long way from where I started. At the 3 year mark I would say I am even better than I was at the 2 year mark which goes to show that even tho nerves are the slowest healing out of all the body tissues, it is possible to heal and to keep healing.

I never thought I would ever have my life back. It’s never going to be like it was before Oct 30, 2013 but it’s sure as hell not the same as it was during the 8 years I spent suffering before surgery.

I am better, but that does not mean no pain. I still have flare ups after some BM’s but not all of them like before. Sometimes I can feel the nerve stinging and stabbing when I am getting close to or during my period. But the pain is not as constant as before and the flare ups don’t last quite as long. I still have pelvic congestion syndrome which is a compression of the ovarian veins which can cause pelvic pain. I was going to get this taken care of this month or next but some personal stuff has come up to which I will have to postpone that.

Here is my advice for folks considering having pudendal nerve decompression surgery:

1) You have exhausted most of your treatment options (but not all!). Don’t leave yourself with zero options after surgery but you have to remember years 1 and 2 will be spent in a lot of pain. Treatments you should consider includes pelvic floor phys therapy, conservative treatments such as lifestyle changes (get a standing desk, limiting your sitting, change your diet to avoid constipation ect.). Steroid nerve blocks, nerve ablation, stem cell injections, valium or other pain med suppositories vaginally or rectally, surgical implanted neuromodulation unit. (This needs to be done with a pain mgmt dr that is familiar with the pudendal nerve)…. Leave yourself some of these to try in case the surgery does not offer any change after 2-3 years. But years 1 and 2 will be spent coping and healing and you should not be trying any NEW procedures until your nerve has healed a lot more.

2) Remember that this nerve takes years to heal. This is not like any other nerve surgery. The pudendal nerve is tied to the autonomic nervous system which if you have underlying dysautonomia like me, these symptoms will get worse. You will be re aggravating this nerve every time you have a bowel movement or have any type of sexual activity, or even physical activity for awhile. so this makes healing a very long time. Also depending on how long you have suffered this pain (some folks have this pain for decades), you will need to allow yourself a lot of healing time. This is not like carpal tunnel syndrome in which it is diagnosed and fixed rather quickly. Your nerve has been impinged with scar tissue for many years so it will take years to heal. You need to be in this for the long haul.

3) Get financial assistance (social sec. disability), move in with supportive family members before your surgery. You will be adjusting to a new normal after your surgery and you most likely will not be able to work a full time job anymore. You also may not be able to do the work you used to be able to do on a daily basis. The first year out of this surgery is a brutal recovery period. You will need to focus on your mental health and adjusting to a new normal so this is not the time to be changing jobs or moving somewhere else. Do this before surgical recovery.

4) Consider rare disorders or diagnosises that have nothing to do with the pelvis. You may be missing part of the puzzle piece as to WHY this nerve is in so much pain. I had no idea I had a connective tissue disorder before I went into surgery. Sure would have been nice to know, and it would have explained many of my other symptoms. But doctors barely know common disorders let alone ones you may have outside of that. There are thousands of more rare syndromes out there you may have and not know it. You need to do your own research and be your own advocate. They will not let you know that you could have this or that based on your symptoms, especially if you don’t fit into a very neat box of what they think a disorder could look like. Presentation varies from person to person. You need to ask the question “What else could I have that I don’t know about that could be contributing to this pain?” Keep looking and keep researching. And take into account what else is going on in your body not just this nerve pain. Most drs have had barely any slides of education in medical school on what could be wrong. Dr’s are not gods. They dont know it all. It’s every man for themselves out there.

What is pudendal Neuralgia?

PN is pain, discomfort or numbness in the distribution of the pudendal nerve. The pudendal nerve is a peripheral nerve that is the main nerve of the pelvis/ pelvic floor. The pudendal nerve emerges from the S2, S3, and S4 roots’ ventral rami of the sacral plexus. It carries sensory, motor, and autonomic fibers, however an injury to the pudendal nerve causes sensory deficits more than motor. These areas include the rectum, anus, urethra, perineum, and genital area. In women this includes the clitoris, mons pubis, vulva, lower 1/3 of the vagina, and labia. In men this includes the penis and scrotum. But often pain is referred to nearby areas in the pelvis. The symptoms can start suddenly or develop slowly over time. Typically pain gets worse as the day progresses and is worse with sitting. The pain can be on one or both sides depending on which nerve fibers and which nerve branches are affected. The skin in these areas may be hypersensitive to touch or pressure (hyperesthesia or allodynia). This is a chronic/ lifelong issue that can severely affect a persons quality of life and there are no simple treatment options.

What is pudendal nerve entrapment syndrome?

Pudendal nerve entrapment or PNE… is pain caused by a mechanical compression/ entanglement of the pudendal nerve between ligaments or scar tissue. Usually the sacrotuberous ligament and or the sacrospinous ligament. The only way to really definitively tell if you have a nerve entrapment is via surgery although some other specified imaging techniques which are able to image/ doppler where there is a hold up/ issue with nerve within scar tissue. This phenomenon is still debated and under studied. Pudendal decompression surgery is how this issue is diagnosed/seen. There are a few doctors who perform the surgery in the USA, but in Europe there are more options in terms of surgical techniques and experience. Please visit www.pudendalhope.com for more information.

The pudendal nerve entrapment syndromes subdivide into four types based on the level of compression.
Type I - Entrapment below the piriformis muscle as the pudendal nerve exits greater sciatic notch.
Type II - Entrapment between sacrospinous and sacrotuberous ligaments - this is the most common cause of nerve entrapment.
Type III - Entrapment in the Alcock canal.
Type IV - Entrapment of terminal branches.

What are EHLERS-DANLOS SYNDROMES?

The Ehlers-Danlos syndromes are a group of connective tissue disorders that are genetic and are varied both in how they affect the body. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. Hypermobility does not always equal flexibility.

The Ehlers-Danlos syndromes (EDS) are currently classified into thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit. There is substantial symptom overlap between the EDS subtypes and the other connective tissue disorders including hypermobility spectrum disorders, as well as a lot of variability, so a definitive diagnosis for all the EDS subtypes when the gene mutation is known—all but hypermobile EDS (hEDS)—also calls for confirmation by testing to identify the responsible variant for the gene affected in each subtype.

What is Maythurners Syndrome?

May-Thurner syndrome (MTS) — also called iliocaval compression syndrome, Cockett syndrome or iliac vein compression syndrome — occurs secondary to compression of the left iliac vein by the overriding right iliac artery. Most MTS patients present with left leg swelling, and are higher risk for DVT (deep vein thrombosis) /blood clots. However many people with left sided pelvic pain and absence of leg swelling may have symptoms of pain and discomfort if their vein compression is greater than 50%.