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Hidden Hernia Agony?
Greetings, Dr. Towfigh, I’ve been following your work closely and I hope that you can provide me with some direction.
Female – 47, 5′ 4″, 110 lbs.
Chronic pelvic pain x 7 yearsDx’d with PN via bilateral nerve block at ischial spine in 2010 where my pain was primarily rectal and coccyx pain, with occasional vaginal pain. I endured 4 yrs of PN somewhat well once I knew what it was and what to avoid via proper sitting, cushions, avoidance, amitriptyline and Advil. Occasionally, every few months, I would have some pain in the FRONT of the pelvis, below, left of navel, along the pantyline/pubic bone and end up in the ER wherein although the CT was clear, they’d dx me w “already passed kidney stones.” I’ve had detectable, scanned kidney stones before, as well as passed them and this pain is not kidney stones and so I stopped going to the ER when it would become unbearable because I couldn’t seem to get clear answers. Frustrated, in 2014, I started taking progestin only birth control and 2 weeks in, I began bleeding heavily and the FRONT pelvic pain went from occasionally to every, single day since. I stopped taking the BCP a few weeks in and this front pelvic pain has been a constant, debilitating agony that sucks the life out of me everyday and profoundly affects my ability to function and quality of life for the past 3 years.
PAIN
It feels like I have broken glass rattling around my pelvis. I’ve told numerous specialists including GYNs this and one finally did a diagnostic lap and found “extensive endometriosis’ and excised the lesions. The surgery, however, provided me with zero relief. None. The pain seems separate from the pudendal nerve pain, but I’m not ruling out that it could be related in some way. The pain in the FRONT of the pelvis is a sharp, pulling, twisting, pinching, burning, heavy, tugging pain that seems to a/effect left of the navel, below left, below the navel and a little bit to the low right along the pantyline/pubic bone. At times the pain extends down to the vagina w a heavy, pulling, pinching, stabbing pain, and some days enormous pelvic pressure. I’ve seen 8+ specialists including GI, GYN, Neuro,Urology and Urogyn. The latter believes this is PFD, however, I’ve been regularly going to pelvic PT for PFD for almost 2 years without any relief. In fact, it’s much worse than it once was years ago.
I’ve had coccyx X-ray (clear), retrograde cystoscopy (no IC), numerous TVU (small fibroid) and an aortic ultrasound (normal). My doctor refuses to order a pelvic MRI for me, as she said “my insurance would laugh in my face” if she argued for one. I find this rather dismissive considering I’ve been suffering for years with no resolution with CPP despite physical (PFPT, nerve blocks), pharmaceutical (“nerve talk” meds) and mental interventions (CBT, chronic pain group therapy, meditation). I have shown the NYT’s article to this doctor and she’s adamant: no bulge, no hernia. It’s very frustrating, as I have jumped through all of the treatment hoops, and seen numerous specialists and so I should think it would be time to order an MRI of the pelvis for a woman with 3 yrs, unresolved CPP, let alone a dynamic MRI. Incidentally, I’d have to travel 4-5 hours to get to a dynamic MRI machine, but at this point I wouldn’t mind.
As per your questionnaire on your site:
DISCOMFORT
Yes, with prolonged sitting, prolonged standing, coughing/laughing/sneezing (I automatically hold my belly to help stabilize the pain, for some reason this helps a little bit), sometimes burning, always tender, sometimes a twisting pressure w urination and a full bladder, BMs are ok and normal, digestion is normal, discomfort going up/down stairs, getting in/out of car and bed, with bending and definitely if I do anything that uses my core. Worse by the end of the day, with any exercise (even just walking), sometimes worse with periods, worse with any lifting, or pushing (like a grocery cart) and worse with belts or pants that are tight in the waist. Too much activity and I tend to profoundly bloat as well.
What helps: heat packs, ice packs, laying in bed in the fetal position with a pillow to my pelvis, TENS (not sure it helps per se, but it doesn’t make it worse) and Spanx, as the binding seems to make the pain a bit more tolerable when up and about, but only temporarily as the pressure to the pelvis along the navel eventually becomes very painful within a couple hours of use.
I don’t drink or smoke and I’ve never had any children. No history of hernia in the family, surgery in 2011 (hysteroscopy) and 2014 (lap for endo/polyp/fibroid), highest pain level has been 10 and sent me to the ER on numerous occasions, lowest has been 7 (this is with pharm pain management), currently my pain ranges between 7-10s and I’m in absolute agony with whatever is going on inside of my pelvis. I came upon the NYTime’s article regarding Hidden Hernia In Women and finally felt some hope in that this might be my issue, as I could have written that article myself. It is precisely what I’m going through. Current meds: Lyrica, Percocet 5-325 (2 1/2 per day), Flexeril and Advil.
I should note that the rear PN pain that began in 2010 (a seemingly separate pain than the front of the pelvis issue) began after I had been shoveling some heavy, wet snow wherein I felt a sharp bolt of pain rip through my pelvis and immediately I began to have cramping and twisting pain in my pelvis, which had me doubled over and lasted for about 2-3 hours, then, within that month, the rectal/coccyx pain began to appear wherein I found my way to a PN specialist a few hours from home and was therein dxd with PN after diagnostic blocks. So, while the PN pain became a daily presence in 2010, the FRONT of the pelvis pain would only appear occasionally, for days at a time and then recede, but like I said, in 2014 it then became a daily battle.
The doctors have told me that I’ll just have to “deal with and accept that you’ll have this chronic pain for the rest of your life.” I’m sorry, but I find this fundamentally unacceptable, especially since I haven’t at least had an MRI of my pelvis. There must be an answer and I cannot imagine enduring this pain for the rest of my life. I’m in agony all day, everyday and I even dream about and feel formidable pelvic pain whilst sleeping. My life has come to an absolute halt because of this pain and I’m desperate for help. I’ve read quite a bit about hidden hernia in women and at this point I’d be willing to travel to CA to see you, Dr. Towfigh, if you think this is a reasonable option. The pain has consumed all of my energy, wherein constantly enduring this agony leaves me little energy to maintain even just the basics of everyday life, let alone leave any energy for joy and happiness. With all of my energy tapped in finding “the answer” to this pelvic puzzle, after years of seeing specialist after specialist, and enduring endless treatments and painful, intimate procedures I’d nearly given up hope until I stumbled upon your specialty. I write this with profound effort, and for one last time, I have proactively summoned some resilient, residual strains of hope to tell my story yet, again, and I would be happy to hear from you with what you think about my particular case.
Thank you for your time and consideration,
jenji
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2 Replies
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Wow, I am so sorry you are going through so much pain and agony.
Your story at first screamed “endometriosis” to me, and indeed that was your diagnosis for which you underwent surgery. Were you then placed on hormone suppression, such as with Lupron or the Mirena IUD? If not, then recurrent endometriosis and/or inadequate endometriosis surgery may be a possible diagnosis.
Secondarily, many of your symptoms are indeed suggestive of hernia. This can be a routine inguinal hernia or a trocar site incisional hernia from prior laparoscopic surgery. I would have to review your images myself to be sure that those are ruled out.
I am happy to see you, of course. If it helps, you can also contact my office to set up an online consultation. (310-358-5020, talk to Sheila, or sheila@beverlylhillsherniacenter.com). I would love to help you get to a diagnosis and hopefully cure of your pain.
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I hope Dr Towfigh responds to you and can give you some insight. I’ve been down the pelvic pain road myself and had many surgeries for endometriosis and adhesions. I’ve also had PT for PFD and I have interstitial cystitis as well so I know the pain you are having is real. At the very least you should have had an MRI done and had it read by a hernia specialist. I suffered for 7 months last year with horrific pain that started after a terrible BM. I was told it was muscle spasm and had trigger point injections that made thrnoain worse. It also flared my IC. After much of my own research and going to so many doctors I thought it was a sports hernia. I demanded my Pelvic pain doctor order and MRI. It was negative other than bulging discs lower back. So, I had and epidural that did not help the pain. I finally went to a specialist in NYC and paid out of pocket fo a consult. He looked at the MRI and did a thorough exam and suspected a femoral hernia. He sent me to his hospital for the MRI with Valsalva maneuver and called me a few days later to confirm. He said he also thought it was incarcerated. Don’t stop searching for an answer until you get one even if it’s not one that you like. I hope you get to the bottom of this and will
have some relief.
Best wishes
mel
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